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.

Looking At Donna’s Face for the Last Time

As I think back to the day of Donna’s funeral service, I think about the friends and family in attendance. There were many people who traveled large distances to attend.  I think about the music and the message. Both were fitting and inspirational. I also think about how peaceful Donna looked.  Her struggles were completely over, and she finally could be at rest. We decided on her purple wedding dress for her burial clothes and plenty of purple in her casket spray. I think she would have been pleased.

Our prayers have all been answered.

She finally arrived.

Her healing, once delayed, has now been realized.

Though once in a hurry, she has no schedule to keep.

She’s just enjoying Jesus, sitting at his feet.

If we could see her now, she’s walking streets of gold.

If we could see her now, she’s standing tall and whole.

If we could see her now, we’d know her pain had all been erased.

If we could see her now, we’d know she had seen His face.

We would never want her to leave that place.

if we could only see her now.

(Adapted from the song, “If You Could See Me Now”)

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.

Once Again the Hospice Decision is Made

The next day, Donna was due for dialysis.  When the nurses in the dialysis unit tried to insert the necessary needles into her arms, the veins would just collapse.  I don’t remember how many attempts they made, I just remember wanting to scream, “Enough!” “Just stop!” “Don’t hurt her any more!!!!” Donna’s nephrologist came to me and we discussed options for her.  He believed it was time to cease dialysis and discuss hospice for her. I knew he was right. I just had to make sure that Darla was comfortable with a hospice decision.

I would like to insert here that I learned a great deal from my experiences with Donna in the dialysis unit at the hospital, and will discuss them in a post at a later date.

Darla and I spent some time that afternoon consulting with the hospice physician at the hospital. After studying Donna’s case and examining her, he believed that even if we didn’t move her into hospice care and tried to begin treatment on her many heal issues, she would only live a few months.  There were too many complicating health factors against her.

After this discussion, Darla and I agreed together that hospice was the appropriate setting for Donna now.  With that decision made and the necessary paperwork completed, Donna was transferred upstairs to the hospice floor.

This was my third time to walk the halls of this unit. My father, then my mother, now my sister all spent their final days on earth here.

The Night Before…..Part 2

Donna’s rally continued all night, and what a night it was.  About 9:00 in the evening, she said, “Deb sing me a song! I replied with. “i don’t sing well. Darla’s the singer in the family.”  She wanted me to sing anyway. So I did.  I sang church hymns, and songs from our childhood. When I had depleted my repertoire of songs, we began to talk about TV shows, particularly cooking shows.  Donna was an encyclopedia of knowledge pertaining to cooking shows.  She knew all the back stories and gossip about all the chefs. Our conversation continued to the wee hours of the morning. I began to get very sleepy and found myself dozing in between sentences. When suddenly Donna exclaimed, “Deb, Sing!” Well, it wasn’t exactly a stellar performance, but I sang many of the same songs.  Even though I was exhausted, physically and emotionally, I knew this was most likely the last time I would be able to talk with my sister. I was right.

After having talked all night, the next day she once again became unresponsive.

Next post: Once again the Hospice Decision is Made

The Night Before……, Part 1

Donna remained in the transition section of the hospital for several days and was then moved to the long term care floor. Her extreme pattern of being awake for entire days, then sleeping for entire days continued.  One day i received a frantic phone call from Darla, letting me know that it appeared things were changing for Donna.  She had been asleep for many hours and her vital signs were changing.  As soon as possible i packed my bags and once again made the journey to the hospital.

As i traveled that evening, Darla called me several times. She told me that Donna was stabilizing somewhat, but was still basically unresponsive.  Darla and another family friend were in Donna’s room when I arrived.  They had the TV going and were trying to have normal conversation, because it was possible that Donna could hear and understand what was being said. Soon Donna began to move her head as if she was listening and responding to what we said.  Then suddenly, she  asked a question about the movie on TV! We about flipped out.  Slowly, bit by bit, she began to talk and talk and talk.

It was decided that I would spend the night with her.  The night before…..

The Downward Spiral Begins

After five nights in Critical Care, Donna was moved onto a transition floor in the hospital. She seemed to be improving, or so we thought. Because of the severe infection in one of her heart valves, Donna was taking strong antibiotics. Her blood pressure was stabilizing. However, every nurse that came in said something about her being very sick. One nurse stated that they had previously had a few patients that recovered from endocarditis, but they were patients that were otherwise healthy. No one was giving us much hope for her recovery.
Donna’s mind was still, well, all over the place. She could remember phone numbers. She could recall things I had told her the day after her heart attack. On the other hand she would do things like put phantom salt on a phantom sandwich she was supposedly holding in her hands. Oh, dear.
She would talk for hours and hours. She would stay awake all night talking. Then when she was given medicine to help her relax, she would sleep for hours and hours. It was a wild pendulum swing. This continued day after day.