My Experience With Hospice Care

When the man that you have been married to for 35 years, and whom you love with all of your heart and soul, is gravely ill, you are numb and filled with heartache like you have never felt before.  I went from a confident woman able to make important decisions to a woman who was lost, alone, and unsure of even the simplest thing.  I no longer trusted my judgment – my world had been devastated, and I was emotionally and physically exhausted.

So, when I was asked to make a decision about in-hospital hospice care for my husband, all I could do was to rely on the expertise of the doctors and nurses who were caring for him.  They recommended in-hospital hospice care, and gave me a booklet to read that outlined what hospice care consisted of, and what services they would be providing for my dying husband.

I remember that there was a contract that had to be signed outlining costs and services, and I remember thinking about all of the red-tape and how everything is a business – even dying.  I wasn’t very knowledgeable about hospice care.

I didn’t know what questions to ask.  I relied solely on their recommendations.  I felt that if they recommended it then that was the way to go – there wasn’t any time to get someone’s opinion or do a little research about it; I just had to make a decision.

So I said, “Yes.”  My husband was in hospice care for about a week.  He was in a coma as his body shut down.  It was a week that I will never be able to get out of my mind.  I was saying good-bye to the man that I loved deeply; it was a week filled with extreme heartache and pain.

Knowing what I know now, my decision would have been different.  I would have chosen not to have hospice care for my husband in the hospital.  He was put in the cancer ward of the hospital and the hospice care was an additional service that was done by a subcontractor.

I found the hospice care to be just another layer in an extremely flawed health care system.  The caseworker was inept, slovenly, and showed little compassion towards us, and the minister although friendly offered little in the way of compassion as well.  All this came at a time when all I wanted was to do was to take care of my husband, make sure that he wasn’t in any pain, be with him, touch him, hold him, and love him for as long as I could…until he took his last breath.

Yes, if I could go back in time and make that decision over again, I would have chosen not to have hospice care.  I know that many people speak highly of hospice and the care that is given; this was not my experience.  Perhaps if you are home and the care is being provided there it is different.  (But in-hospital hospice care seemed to be just another layer in the system.)

What could they have done differently?  Perhaps, the hospital administration could have explained the process more thoroughly.  (I really didn’t see any value to their service other than to see that he was being taken care of – certainly I was capable of that.)

Also, I feel that the caseworkers from the hospice contractor need to have sensitivity training on a regular basis, so that they can deal with a grieving family in an appropriate manner.  I also feel that management should make sure that their employees are well kept and represent their service well.

As I look back, the best care that my husband received was from the skilled, dedicated, and compassionate nurses who took care of him in his final days.  Without their dedication and compassion, and knowing that they were taking good care of him I never would have survived the unbearable pain of losing my husband.

Paula Ezop 2011

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Paula Ezop

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Paula M. Ezop’s inspirational columns, Following the Spiritual Soul, have appeared in Oconee Today, a South Carolina Scripps Howard publication. They are currently in: Celebrating the Success of the Modern Woman, and Esteem Yourself. She has contributed to Chicken Soup for the Caregivers Soul and she has written the foreword to Whispers of Inspiration, a collection of poetry and prose gathered from voices around the world. Paula also co-authored a book in the Mommies Line, Spirituality for Mommies. Her Ebook Sparkly Bits of Spiritual Wisdom can be found at Amazon's Kindle Store and various other online locations. Wiggles Press has published her children’s chapter book, The Adventures of Penelope Star and the Mystery of the Three Dragons.

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  • Laurel says:

    Dear Paula, I am sorry for and truly understand your loss. My experience with hospice was the opposite of yours. My husband of 42 years passed away in 2009. After a one-year fight to keep him alive, we brought in hospice to our home from which he transitioned. For me, they were like angels who swooped in with kindness, understanding and a gentle knowing. I will be forever greatful for their tender care, responsiveness and for the bereavement counseling they provided after my husband’s death. They were there for us when we most needed a gentle and loving presence. Again, I will be forever grateful to the Tidewell Hospice staff.

  • Deb Kosmer says:

    Paula, I am so sorry that you not only had to cope with the death of your husband but what sounds like a very inept system as well.Having worked in home hospice for 10 years experiences like yours really tug at my heart. Wishing you peace,Deb Kosmer

  • Bill Gard says:

    Paula, I am so sorry you lost your soulmate and that you had a bad experience with hospice in the hospital. My wife Patt was put under hospice care on 2/1/11, due to ovarian cancer. She fought a hard battle for about 2.5 years, but got to the point where her body couldn’t take chemo anymore. We had hospice care at home and it was the exact opposite of your experience. Patt, my wife only lived for one month. I couldn’t have made it without our hospice people. It’s a shame you didn’t get all the info you should have from the hospice people and from the hospital. I pray that you are doing the best you can.
    Bill

  • sallie says:

    IT’S BEEN 6 MONTHS AND THE GRIEF AND PAIN ARE THE SAME DAY IN AND DAY OUT IF I CAN BE BUSY IT WILL GIVE ME A MOMENT OF PEACE, BUT ONE CAN’T BE BUSY ALL THE TIME AND THEN MY MIND GOES BACK TO HIM, MY BESTFRIEND, IT’S NOT REPLACEABLE I CAN NEVER GO OUT AND FINE HIM AGAIN, HE KNEW ME LIFE NO ONE EVER WILL, HE LOVED ME LIKE NO ONE EVER CAN, THE LOSS IS OVERWHELMING AND TIME DOES NOT STOP IT, MY HEART IS BROKEN FOREVER, NO ONE UNDERSTANDS THE GRIEF ITS SOMETHING YOU CANNOT TELL SOMEONE ABOUT UNTIL THEY LIVE IT, I JUST LIVE HERE BUT I DON’T LIVE HERE I LIVE IN MY MEMORIES OF US AND I LIVE IN THE SADDNESS OF MY LOSS. I WANT TO STOP THE PAIN AND I CAN’T IT’S WITH ME ALL THE TIME, I SMILE TO THE OUTSIDE WORLD BUT I’M CRYING ON THE INSIDE. I JUST WANT ONE MORE MINUTE WITH HIM, ONE MORE KISS, ONCE MORE TO TOUCH HIS HANDS AND SEE HIS BLUE EYES AND KNOW THAT LOVE. ITS JUST SO PAINFUL TO BE ALONE LIKE THIS, HOW DO WE GO ON, WHY DO WE GO ON