Setting Boundries

Amy is a minister’s wife and up until she received her cancer diagnosis, was a Mary Kay director.  Because of her ‘people’ personality, she has many friends who know and love her.  She has always been easily accessible by phone and has always welcomed people into her home.

However, when she received her cancer diagnosis, I witnessed a change in her accessibility which I initially respected, but have come to admire.  Amy decided that she could not repeatedly talk to everyone who called about her cancer.  She could not welcome every guest who wanted to drop by to express their concern.   She knew that her number one priority was to beat cancer and conserving her physical and emotional strength is a necessary part of her recovery.

Therefore she seldom answers the phone or doorbell.  She answers emails when she feels like it, and she keeps a journal on caringbridge.com.  If a church member wanted to support Amy and Brent with food, they coordinated it with one person rather that just dropping it by the house.

Let me be clear here. It is not that Amy is shutting people out of her life.  She does talk to people, but she does it on her own terms, i.e., when she has the strength, or when it is convenient.   She keeps people up to date on how she is feeling and how her treatment is going by way of  journal entries.  Amy is still just as much a people person as before, and she totally appreciates all the cards, emails, comments left on Caringbridge, and so many other ways support and love is shown to her.

I appreciate  Amy setting this type of example for us.  We do not have to be a ‘slave’ to the telephone and doorbell.  We do not have to let it drain our emotional and physical strength.  We can choose to walk down the path of cancer or serious illness at least to some extent on our own terms.  We can choose to do what is best for us.

You go, Amy!

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Everyone Has A Story

From the beginning of their illness till several years after their deaths and sometimes even now, their illness was a story that lived in my head.  It was a story that looked for opportunities to be told again and again.  It wasn’t that I intentionally told my story to everyone whether or not they wanted to hear it.  I really understand that some people did not want to hear the details of our crisis, and that was OK.

However, I found that when I was around someone who was interested and would listen, then I found myself starting at the beginning of the story and unable to stop until I reached the end.  It was like a faucet that I couldn’t shut off.

I had never before experienced this compulsion.  This desire, this need to share my story about my parents from beginning to end over and over again, in the same way, saying the same things to anyone who will listen.

After talking to families of patients on the oncology floor when my parents were hospitalized, I realized that I was not alone.  Every family had a story and time after time I listened to their stories from beginning to the point their family member was in their treatment or recovery at that time.

I have a precious friend who one day shared with me the story of her mother’s passing away at least fifteen years ago.  It took her 30 minutes to tell me the story, but once again she did not stop, could not stop until she got to the end.

You know, I really think we have a need to ‘pick up’ the emotions surrounding our story, feel them once again as we talk, and then release them to the back of our mind for a while…….  I believe this to be a good thing.  As long as we understand that not everyone wants to hear everything and most people don’t want to hear it multiple times.  We must, of course, be considerate of them.

This ‘story-telling realization’ helped me understand myself and my need to talk, talk, and talk some more about my family’s cancer story, but I also began to be understanding when others had a need to talk, talk, and talk some more about their family’s story.  We all have one or one day will have one, you know.

Feeding Tube Lessons

After writing about our family’s experiences with inserting feeding tubes into the stomachs of precious loved ones, I have now arrived at the point of drawing some conclusions and sharing what I have learned.  This discussion must be prefaced with the caveat that I am not a medical professional.  I don’t have all the information about feeding tubes, nor can I give advice to a family.  I can only share with you my personal conclusions on this topic.  In addition, it is entirely possible that what I write in the next two posts, might completely change in the next 5 years because of presently unknown future events.  We don’t know what the future holds for us and our family.

I have learned that sometimes a inserting a feeding tube is entirely appropriate.  When a person has a curable disease and needs a temporary way of getting nutrition and hydration, then by all means. put that feeding tube in.  If a person is otherwise reasonably healthy, has a reasonable cognitive ability,  understands about the need for a feeding tube, and is in favor of it, then, again, I think a feeding tube is appropriate.  If a person has a type of cancer that has taken away their ability to eat, but otherwise the cancer is moving slowly, and that person is still enjoying life, then with that person’s permission, put in the feeding tube.

On the other hand, If a person’s quality of life is very low, if that person is just lying in a bed, not able to communicate, recognizing no one, is ready to give up this life, or does not have the cognitive ability to understand the need for a feeding tube, much less make a decision about it, then perhaps inserting a feeding tube, would not be appropriate.  If that person is in continual pain and must be kept sedated to the point of not being conscious, then perhaps inserting a feeding tube would cruel, not kind.

Taking out a feeding tube is also a very difficult decision and should not be made without considerable prayer and discussion on the part of the family and family member if possible.  If a family member’s physical condition is one of pain and suffering, if they are unconscious, if they have no cognitive ability, or if they are ready to die and have expressed a desire for the feeding tube to be removed, then take it out.  However, if it is taken out, then, family, make sure that certain things are done, such as oral hydration so that your loved one’s mouth does not dry out.  It is your responsibility to see to these details so that your family member will then pass from this life into the next with as little discomfort as possible.

Strength For the Day

When you are the caretaker of someone with a long term or perhaps even terminal illness, how do you ‘keep going’? How do you, day after day, do all the things that need to be done? Unless you have walked in those shoes, you don’t know how difficult it is. You can’t imagine how intense the physical and emotional fatigue is when there is no relief and seemingly no end in sight.

Some of you reading this blog are facing this type of situation. Perhaps you are in the midst of such a storm in your life, or perhaps you have finally reached the light at the end of your dark tunnel. If so, then you also have your words of wisdom, things you have learned or allowed God to teach you. Be willing to share your wisdom with other caretakers in your ‘circle of influence’.

God’s Grace is sufficient for the day. That is all we need. His Grace for today. His strength, His Wisdom, His Comfort, His Peace, just for today. Tomorrow will take care of itself. There will be a day when life begins to return to normal and when the physical and emotional stress is less.

Taking care of parents with cancer is not unusual. Many many people have been afflicted with this disease. What was unusual for my sisters and I was that both our parents had stage 4 cancer at the same time. They were both intensely ill and required a tremendous amount of attention. It was thus far in my life, the most difficult period of physical and emotional stress I have every endured.

It was by allowing God to be for us what we needed each day, that we found this time, however difficult it was, to be filled with moments of sweetness and love, providing us with last experiences with our parents that we will cherish for the rest of our lives. Only God could do that.

He can do the same for you. Allow Him to be for you what you need for the day.

Taking Care of Your Parents

“Once the parent becomes the child, there’s actually a sweetness that returns to the relationship as it calls up from the heart maternal feelings instead of old rebellions and resentments.”

This is a quote from Darla concerning the changing of roles we experienced as we walked down the cancer path with our parents.

I remember thinking….”This situation is about them, not me.” It is about what is happening to them, not what is happening to me. The important thing is about the cancer in their bodies, not the weariness in mine. It is about their physical pain, not my emotional pain. It is about making sure they are as comfortable as possible, not whether or not I got a shower that day. They became the focus of my attention.

There are no perfect parents and mine made their share of mistakes with my sisters and I. I still carry with me baggage that came from some of the poor parenting decisions they made. However, once they entered the arena of terminal illnes, I stored all that baggage in a closet in my mind and closed the door. None of it mattered. None of it was important.

What was important was the fact that my parents were sick and I was not going to abandon them. No matter what. With the baggage behind closed doors mentally, I was free to love my parents and care for them in their last months, weeks, and days without any resentment or contemplation on how this was affecting my life. Yes, I had my moments of exhaustion, physical, mental, and emotional.

However, those moments were temporary, because I recognized that my parents illnesses were also temporary. One day they wouldn’t be sick any more. One day they would not be in any pain. One day they would be completely healed. Their lives would come to and end here on earth and they would be in heaven “standing tall and whole”.

Because their illness was temporary and would one day be over, and because my life would then return to normal, albeit a new normal without my parents, I kept putting ‘one foot in front of the other’, day after day caring for and loving my parents.

As I share these thoughts, I must also say that my sisters also did their share and more. We were all in this together and none of us grumbled or complained to each other or to our parents.

However, Darla did jockingly say to Mother one day, “Mother, if you and Daddy were both going to have cancer at the same time, you should have had more children!” She gave us our laugh for the day.

Teach Your Children How to Make Good Decisions

    Why?  Because one day they will be making decisions for you.  Yes.  That is the reality of life.  If your children outlive you, then one day they will begin to make decisions on your behalf.

For some families it happens gradually.  The parents slowly lose their ability to decide the large, then the small day to day dilemmas.   For other families, this transition is almost shockingly quick.  Seemingly one day the parents are self-sufficient and handling life as it comes, and the next they need help making a grocery list.

This became reality for me when my parents had cancer.  I suddenly found myself making decisions that they had made for themselve just days earlier.  Big Decisions.  Small Decisions.   Decisions that would be difficult for me to make for myself, and here I am making those decisions for my parents.

It was a shock to realize that my parents were no longer capable of handling life on their own and would probably never be able to again.  Coming quickly on the heels of this shocking realization was a second equally shocking one.

One day my children will be making decisions for me. Big decisions. Small decisions. One day I will no longer be capable of handling life on my own.   I am not being pessimistic, just realistic.

Therefore, teaching your children how to make good decisions is not only in their best interest, it is in yours as well!

The Pendulum Swing of Emotions

Think of the swing of a pendulum. Its swing in one direction is equal or almost equal to the swing in the other. Our emotions during a time of crisis such as a terminal illness swing back and forth from despair to elation, depending on the events of the moment.

Last week when Wayne and Glynn were facing a series of scans and tests which would show whether or not Wayne’s pancreatic cancer was responding to the chemotherapy and radiation treatments. They were scared, nervous, emotional, worried, and any other negative emotion you can name. The morning they left to go to Dallas to have these tests run, Wayne looked bad. He was weak. He was pale. His eyes filled and overflowed with tears frequently.

Once they received the results of the tests and learned that the cancer had not spread, their pendulum of emotions swung back to the other side. The degree to which they were worried corresponded directly to the degree to which they were excited. The next time I saw Wayne, he had a big smile on his face. He no longer looked pale and he was about to eat a big plate of food.

Whenever you are in the midst of physical trauma such as this, your emotions will experience the same trauma. You may be very sad, filled with despair and without hope, and then something positive will happen. It doesn’t have to be something big. It may be a small as one meal that tasted good, or a test that came back with good results or at least no bad results. Then your emotions will ‘latch on’ to that one positive thing, and immediately swing to the other side of the pendulum.

I remember thinking about my emotions when my parents were sick. At that time I compared my emotions to a roller coaster ride which is not an inaccurate description. I remember saying that I had experienced every emotion you could name while Mother and Daddy were sick, especially during the 3 months when Daddy was in the hospital, with Mother also being in the hospital 5 weeks during that time. It was horrible.

Once we understand that these emotions will be there, we can not fight them, but instead seek to control them. It was during those times that I had ‘scheduled cries’, moments when I could let my sadness, despair, frustration, anger, hopelessness, rise to the top of my mind and heart and flow out the tear ducts in my eyes. By giving my emotions space to be in control for a while, then once I finished crying, I could then control my emotions, for a while at least.

Your emotions are going to be part of what you are enduring. You are going to feel everything you are going to feel on both sides of the pendulum. You can’t stop it. Instead you should expect it and accept it. Then you can control it.

And oh, yes, get all the ‘mileage’ you can out of good news. Yep. Let the good news carry you as far as possible. Smile. Laugh. Tell it to everyone.