Hospice Care is primarily comfort care.Ronnie was not going to beat this cancer so he had no therapeutic treatment. Mild pain meds were all he needed to keep him comfortable initially.
The growth of the tumors in his brain were causing confusion and memory issues for Ronnie which were evident at his original diagnosis. The doctors in the first hospital prescribed dexamethasone, a steroid which helped with inflammation and slowed the growth of his brain cancer. The hospice doctors decided to continue this treatment and it made a huge difference in his ability to think, reason, and remember for several months.
All things considered Ronnie’s care was adequate for his needs for about 3 months. We were rocking along.
The doctors at the VA in Albuquerque decided that, considering the gravity of Ronnie’s health, and the decisions I had made regarding his treatment, the hospice unit would be an appropriate placement for him. I agreed.
So here I go again. Once again completing the paperwork, talking to the nurses, meeting the chaplain, and on and on.
My emotions at this point were just whirling. I was feeling a great deal of grief, because I knew my uncle’s life as he had been living it was over. I felt guilty because I was the one who made the decisions that took him from his home. I felt grateful and thankful because things had worked out so that I could be close to him. I felt some anger at Ronnie because his decision to smoke all his life had resulted in his body being consumed with cancer. Yes, I felt a complete range of emotions with clear reasons that I could articulate about each one.
Having been down this path though has helped me put whatever I am feeling into perspective. I am not the person in the midst of this crisis. Ronnie is. My feelings are secondary to his situation. He is the person who is ill, facing pain and death. My life will go on. His will not.
I had never driven that far by myself. Well, even though I was the only one in my car, I wasn’t alone. God’s Presence gave me strength and peace, and I strongly felt the prayers of my husband and my sister. My drive to Albuquerque went smoothly, and even though I had never been there before, I had no problems finding the VA hospital. Thanks to God and my gps.
I easily found Ronnie. In a ward with several other veterans,he was thrilled to see me. He seemed weak, but not in pain. Ronnie was emotional about all the events of the last few days, crying easily and frequently. When I began to talk to him about his diagnosis, he cried even more.
Within just a few minutes of my arrival at my uncle’s bedside, two doctors walked into the room and began to talk about his diagnosis, and the fact that some decisions needed to be made. Because Ronnie still had a great deal of confusion, the doctors felt that he was not capable of making those decisions himself.
At this point I did not have medical power of attorney, but because he never married and had no children, and as the oldest of his nieces and nephews, I was considered to be his next of kin. Therefore, the decisions were mine to make. The doctors wanted to talk to me alone.
I looked Ronnie in the eyes and asked him if he trusted me to make decisions for him. He said that he did. I then told him that I loved him and would take care of him to the best of my ability, just as I did his mother. We both cried.
For about 30 minutes, the doctors and I met and discussed treatment options for Ronnie. One of the doctors was an oncologist and the other was a hospice specialist. They were very easy to talk to and had quite a of information about Ronnie’s condition.
Next post: Making major medical decisions on Ronnie’s behalf.
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.
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.
Several months ago I was honored to be contacted by the Hospice Foundation of America. After reading some of my posts about my family’s experiences with feeding tubes and decisions involved with that issue, the HFA wanted to talk to me. They asked me to be part of a DVD they produce annually which provides training for hospice clinicians.
The interview lasted about two and a half hours, and I was completely emotionally and mentally drained at the end. I shared the entire story of my parent’s cancer, and discussed my mother’s feeding tube, as well as my father-in-law’s feeding tube. The filming was professionally done and I was respectfully treated.
A few weeks ago I received my copy of the DVD, and was very pleased with the way it ‘turned out’. It was well designed and professionally edited. My original interview was condensed and inserted into several places in the presentation,
I would like to thank the Hospice Foundation of America for including me in this project. It was a privilege and an honor. Perhaps some of the things I said will be helpful in the way clinicians work with hospice families as they work through the decisions involved with feeding tubes.
Caring for a family member who has cancer has it’s own unique challenges. Challenges not found in other long term care situations. These include, but are certainly not limited to chemotherapy and radiation and the side effects that go with them.
However, there are challenges I faced with Mom’s care that are applicable to any situation that involves working with health care professionals, from hospital staff to hospice staff.
Building positive relationships with everyone who cares for your loved one is an absolutely necessary building block. It will help ensure that your ill family member will receive good care, especially when you are not present.