Time Goes By

Life gradually gets more difficult for Ronnie. The lymphedema gradually gets worse, and MERSA sets in. The treatments for the infection are painful and gross. I can no longer take him on outings because his swollen bandaged feel no longer fit into shoes.

I found myself buying cigarettes for Uncle Ronnie, which was something I never thought I would do. However, since he had a short time to live, I felt it was important for him to be as happy as possible.

Through all of this Ronnie maintained his sense of humor, and his positive attitude. No matter how bad his day was physically, I never saw him have a bad day emotionally. What a man.

My Biggest Regret About Our Decision to Remove Mother’s Feeding Tube

I have discussed this regret in a previous post, but am going to write about it once again because it is a very important part of this topic.  For some of you it may also fall into the category of TMI (too much information) because it is rather gross, but nevertheless this information is also relevant to our discussion.

We place Mother in the hospital on the Hospice Unit Sunday afternoon.  The decision to remove her feeding tube was made on Monday and by late that afternoon, it was gone.

After my sisters and I said goodby to our Mother, we decided to ‘let her sleep the rest of the way’, by keeping her sedated.  We could tell she was in pain, and decided there was no reason to have her awake any more than necessary.

By Wednesday afternoon the effects from the lack of nutrition and hydration had set in, and I noticed the change in her tongue.  It was swollen, and had a hard, leathery look to it.  It looked absolutely hideous.  There is no way it could not have contributed to her pain level. I didn’t ask the nurses about it.  I don’t know why.  I am usually attentive to all kinds of detail when it comes to hospital care, but I didn’t mention this.   A major regret on my part.

The next day I noticed that the nurses had brought in moist sponges on a stick. (I’m sure there is a medical name for this, but I don’t know it.)  I’m sure the sponges did some good, but my opinion is that was too little, too late.  The nurses didn’t talk to me about it either.

Recently I discussed this regret with a friend who is involved in a hospice program.  He shared something with me that I think is significant here.  There should have been more oral care done with Mother from the moment the feeding tube was removed.  If that care had been given, then her tongue would not have dried out at all.

I have no other personal experience with which to compare what happened to Mother.  I just wish that I had had the advantage of 20/20 hindsight beforehand!  Of course, there are no ‘do overs’ here, so I refuse to dwell on this and let it be a burdensome memory.

However, if my 20/20 hindsight will help some of you as you face a similar situation with you family, then it has all been worth it.

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.