My husband passed away Tuesday a little after midnight. He was only 34. I hate this disease and addiction so much. We have 3 little boys, all were so close with their daddy. Especially our 9 year old. Thankfully we were able to get him home from the hospital so he could pass in our bed with all of us.

I wasn’t prepared for how it would be the moment he went. He looked so afraid. He hadn’t been able to communicate with me all that day. He was just looking at the room and making this moaning noise. All of a sudden he looked directly at me in my eyes like he knew it was me and then his look changed to complete panic.

My Caregiving Journey
Through The Eyes of Advocacy Ambassador Melissa (Sanchez) Tolzien

My name is Melissa Marie (Sanchez) Tolzien. I am an Advocacy Ambassador for the
American Liver Foundation. I am a member of the National Kidney Foundation’s Kidney
Advocacy Committee. I advocate in memory of my Grandparents Linus and Aira
Sanchez.

My Grandmother was diagnosed with End Stage Liver Disease Idiopathic (Unknown
Cause) Cirrhosis in October 2012. I assumed my Grandmother must have had a genetic
predisposition to Liver Disease because her mother also passed away from End Stage
Liver Disease Idiopathic (Unknown Cause) Cirrhosis. My Grandmother bravely battled
End Stage Liver Disease from 2012-2014. I witnessed my Grandmother fearlessly fight
her disease until her last breath.

Caregivers get too little help and we don't often think about how it is for those around a patient. The writer struggles with the burden as a young person.  It is more commonly a challenge for the older generation.

Can’t sleep.... the worrying and waiting is killing me. My ex boyfriend is top of the transplant wait list with a meld of 38/39. He is currently living with me as the place he was renting did not have a kitchen and he needs to stay on a strict low sodium diet. He is in and out of the hospital and it’s a constant roller coaster.

He has lost over 50 lbs, is severely jaundice, acitites, fluid buildup, issues with sodium, bruising, bleeding issues and more

I know he wants me to be more nurturing but I have a really hard time feeling sorry for him when he did this to himself. (Alcohol) He also lied for months to his friends and family about his condition saying I was overreacting to the point many cut me out of their lives. He only told them the truth a couple months ago. I’ve been dealing with this since last January.

My name is David Frank. I don’t have any sterling medical credentials or a background in healthcare.  What I do have is a very personal connection to NASH and a drive to take action to help raise awareness of the deadly disease.

To learn more about David's story you can go here

https://t.co/lycvGLXA6L

In October 2014 my mother Geraldine passed away after a very brief and completely unexpected battle with late-stage NASH.  She was only 62 years old, and had only been diagnosed with NASH six weeks prior to passing.  Like most people, my family and I had never even heard of the disease that took her from us.  She was a gregarious woman, a prolific cook who was known as the matriarch of our extended family.  She constantly struggled with weight after having her three kids, and became heavier in her later years, but was never what any of us considered to be THAT overweight.  Sure, she had minor health concerns as most 62 year olds do, but we never were aware of anything wrong with her liver.  Until, as many similar stories about NASH go, it was too late.

Posted anonymously by admin

Super upset right now. He came home from the hospital on Saturday early afternoon. He is now on Hospice Home Healthcare. Hospice told him to get a prescription for pain medicine before he left the hospital to last him 72 hours, which he did, 10 mg oxycodone and Fentanyl patches. His Hospice nurse came out around noon today and met with him. Saw that he only had 6 pills left and a couple Fentanyl patches. We told her that he would like to go back to the 15 mg oxycodone that was actually helping him before his pain doctor cut him down twice over the last 6 months because of all the opiate overdoses. Well, Hospice nurse called back and said that the Hospice doctor isn't going to write him another prescription for oxycodone, even though he'll be out soon. She told me to just change his Fentanyl patch and add a half of another one, even though he told her that he didn't like the patch. All he wants is his oxycodone 15 mg and to try something different for long lasting pain relief. He still can't get the pain relieve that he needs even with a prognosis of less than 4 weeks!! Luckily, I have kept his pain doctor in the loop about the prescription he got from the hospital and the fact that he is now on Hospice, like they said,

would give his pain doctor more freedom to give him the 15 mg oxys 4x's a day again. And hopefully something different for long lasting pain relief. The Hospice nurse said he isn't allowed to see any outside doctor or call 911 or go to the hospital now that he's on Hospice but they aren't helping either. I thought the whole point of Hospice was comfort care? Seems like he's just going to be jacked around again as usual. He's suppose to get a "comfort package" in the mail probably tomorrow which is suppose to have liquid morphine, which he said doesn't last long, Ativan, which will worsen his HE, and Haldol, which he is allergic to. I just don't know what to do to get him the relief he needs. 😞

The caregiver journey often ends attending a loved one through the death vigil.  It isn't something that we do everyday and for most it is a life affirming or life altering experience.  Rarely do we wonder how the professionals that attend to deaths everyday think about the process.

I happened to read a very perceptive piece by Dr Jeremy Topin who wrote in his personal blog, www.jtopin.wordpress.com, about a particular patient.  I'll include an excerpt here but recommend reading his entire article.

Mrs. Valentine’s family waits for me in the ICU. The overnight nurse has already filled me in on the evening’s events. The family has come to a unified decision and they have called friends and loved ones from near and far. Their mom has been on the ventilator for six days and continues to get worse. Her pneumonia and kidneys are the most urgent problems, leaving her dependent on a ventilator and dialysis. But underneath the surface, her lung cancer is the real culprit. What started as a time-limited trial to see if her lung infection could get better, had now run its course. The family knows we are no longer helping her to live; we are prolonging her death. This is not what she wanted.

All of us face the difficult prospect of a parent or loved one suffering from an illness that ultimately leads to death. When that time comes, we will want to ease their physical and emotional pain, respect their wishes, and allow them to die with dignity — the same things we will want for ourselves.

https://www.statnews.com/2017/02/24/end-of-life-care-improvements/

The way that Americans die has changed but, unfortunately, our medical system hasn’t kept up. It was designed at a time when death was often sudden or declines in health were relatively rapid. These days it is often a long and very difficult journey to death. When that time comes, we will want to ease their physical and emotional pain, respect their wishes, and allow them to die with dignity — the same things we will want for ourselves. much more common for people to live longer with multiple chronic conditions, and we have the technology to prolong life as death approaches. End-of-life care is fragmented, intensive, and costly — and patients’ wishes are often lost due to poor communication.

Two serious gaps in health insurance coverage threaten many people facing the end of life. Medicare does not provide coverage for social supports, like breaks for family caregivers, or for the coordination of care. Medicare policy should be changed to include benefits for those diagnosed with advanced illness that provide social supports and care coordination through a defined care team. This kind of coverage would encourage team-based organizations to meet the needs of patients. Medicare should test the integration of its hospice benefit into Medicare Advantage and other demonstrations. Improving efficiency and delivery will help those who are seriously ill get the care they need — and help their caregivers deliver it — without jumping through hurdles and battling a bureaucracy not designed with their circumstances in mind.

My mother, Geneva Eskridge, was one of the inspirations for this foundation. She passed away, a few days short of her 94th birthday of complications arising from her lung cancer. Her family was there and had been with her during her final days. She was well and truly loved by those who knew her and she rarely met anyone whom she did not befriend. She will be sorely missed by many.

For anyone not familiar with her and for those who knew her well I’d like to offer a brief visit with her indomitable spirit. Geneva exemplified the best of us and we can but hope to approach our lives in the same spirit. When diagnosed with lung cancer at the age of 91 she decided to go skydiving rather than retreat from life. The link below is to her first jump and the second is when she jumped again at 92

https://www.youtube.com/watch?v=iG17sLXxQIU

https://www.youtube.com/watch?v=Z5xGKVLJxxE

I only hope that I can live up to her example with my life and our family offers her memory to you as an example of a life well led. I regret that the role of caregiver, which I worried that I might be unable to perform adequately, was cut tragically short by unforeseen events.

The caregiver's role for most is a date with the inevitable.  This is a special burden that anyone who has not done it cannot really wrap their minds around.  There is an odd relationship that develops between a person who knows that death is nearby and a loved one who accepts the role of helper in the vigil.  Even if unspoken or acknowledged there is a link quite unlike any that one has in everyday life.  Regardless of the circumstances there is a unique relationship between the main character and the watcher in this very human drama.

Most of the time we think little about our own death.  For most of our lives we see it as being some far future which we don't dwell upon.  Being a player in the drama forces an awareness of our own mortality upon us which I suspect never really goes away.

My mother passed away a few days ago and I find that my mind seems to have a mind of its own as memories of happier times rise unbidden and somehow get stuck in my eyes making them blurry.  

We live with change every day and we hear of the death of people we know and love throughout our lives but the act of participating changes you.  For the better I am hoping as I don't wish to go through the rest of my life with a rogue mind but if you ever are faced with the decision of whether to be a caregiver or not, do it if you can.  As hard as it is you will be better for it.