Daily Living Blog

The River – Pam Billings

Pam Billings, Director of Operations for Homecare Suppliers, wrote this recently and we decided to share it. As each of us encounter the storms of life that affect our daily living, our mobility, our ability to live without or in spite of limits – may there be a word of encouragement on the journey…

Recently a friend called to get information from me about living with Liver Disease. She has a friend whose Mother is dying of Liver Disease. My own dad died of Liver Disease. I wrote the following note to explain my perspective of the disease. This is the first time since my dad’s death that I have written anything about this.

Dear Jane*, (*name has been changed)

Having a parent sick is a roller coaster. You hardly have time to think beyond the care and situation of that loved one. Thoughts swirl – the status of the current situation, the doctor’s qualifications, the nurses’ care, next steps in the medical process, diagnosis, necessary absence from a job, child care, the expense… With all of the decisions that have to be made, you rarely have the opportunity to really contemplate life without this person. Liver Disease not only makes things fuzzy to the victim of it, but it also does so to the family. Liver disease is ugly.

A good analogy for me is a river. The river can be deceptive. The top may be calm and inviting. But what lurks below the water is dangerous and swift; it can surround, pull down, confuse, and eventually drown. When I think back to my dad, I just remember a three year battle of ER visits, hospital stays, and an array of doctors and nurses. Everything is very hazy.

Personally, this is my journey down the river with my dad:

It took over three years, once it was diagnosed. Who knows when the damage actually occurred – probably after all those years of working with photographic chemicals as a professional photographer. And then the condition was possibly further exasperated by his continuous over-use of Extra Strength Tylenol to control his ever increasing migraines that he had as a result of an undiagnosed damaged liver.

I have only three strong memories from that 3 year time frame.

1- A consultation with a neurologist. Her prognosis was ‘permanent brain damage’. That was about a year or more into the disease. Thank God that one did not happen.
–My mother realized that my father needed to have doctors that communicated better with one another. She found a practice that had many “specialists” under their umbrella: heart, diabetes, liver, neurologist, etc… They all got together to discuss his prognosis, his treatment, his diet and the medicine that he took. Mixing various prescriptions can be quite dangerous.

2 – A moment in the ER with my dad laying on a stretcher. He was not very coherent. I really wanted to address issues of forgiveness and eternity. I felt such an urge to tell him about God. I was too afraid to do any of that. So, I instead said something like “you are a good person; you have been a good Dad, and did your best with all of us, and God loves you.”
–Thankfully, God gave him another year and we were able to address those big issues when he was coherent. My husband and I were able to talk to my dad about God. I was able to express how much he meant to me. My siblings were able to spend time with him and verbalize forgiveness and love. Emotional healing came for all of us.

3 – A phone call: “Dad is sick again. We think he will be okay. We will keep you informed.” This was three years into the disease. It was a Thursday. I was on a camping vacation in Minnesota with spotty cell service. Friday there was no call. I assumed that all was well. We went on a paid boat and fishing expedition. I did not give him much thought. I assumed, this was another typical cycle of ER, Hospital and then home. Saturday a phone call: “Come home. Dad is in a coma. He is on life support.” 14 hours of driving – no sleep. From that moment on, I remember everything clearly. They turned off the life support on Sunday afternoon, and he stayed alive for almost 24 hours. However, he was in a coma that whole time. His passing was peaceful! 4 of his 5 children and wife watched him “Go Home”.
–Those last 5 days were not as stressful as they might have been – since my parents had made preparations for this day. My mom had set up herself and two of the children as Power of Attorney. They had signed documentation for a Trust, a will and a Living will prior to his death. They had purchased joint funeral plots and they’d been transparent about their wishes with all of the children.

Jane, I wanted to share my thoughts and story because you need validation for the things you are thinking; the frustration you are feeling; the guilt that you have. It is all normal. If I had to look back and reassess, my only wish is that someone would have said at the beginning, “Let me explain the journey of a failing liver… Get prepared. Talk through the best/worst case scenarios, the unresolved stuff, and what should be done when it is time to really ‘Go Home’.”

I know we were fortunate. My parents were able to make those end of life preparations. They had looked not just to the financial situations to assess, but also at the physical, legal, mental, emotional and even spiritual aspects of the circumstances of his disease and the prognosis of death at the end of the disease. All of us had gone through the physical and verbal motions of “when” and “what to do” regarding his death. Yet, even with all of that, nothing could totally have prepared us for the moment and later the pain of loss. I learned from this experience – you do not know when, but planning ahead, actually makes the end a little easier. When I look back, I only look at the good that came from the situation and have peace knowing that I will see him again.

There are amazing support groups to assist in caring for aging parents. There are also a plethora of resources to assist whatever the situation. Here are some suggestions to keep in mind when caring for a loved-one that is dying.

1. Communicate with doctors, nurses, family and the loved one so that everyone is on the same page and thereby decreasing the opportunity for miscommunication or misunderstandings.
2. Discuss the wishes of the loved one. If possible, put a plan into place including all necessary legal documents such as DNR, Living Wills, and financial arrangements.
3. Be authentic and real. Share with your loved one how much you love them and talk to each other truthfully and honestly.
4. Remember – Be pragmatic yet compassionate and walk in patience.
5. Reach out to family, friends and the community for support for your loved one as well as yourself and your family.
6. Make sure to take time for yourself. Stepping back allows a fresh perspective and renewed understanding as you handle each day.
7. Find a Bereavement Support Group – Hospice, Hospitals, Churches and community organizations usually offer these.