Hospice Care
Posted: Monday, March 23, 2009
by Jean Purcell
OpineBooks.com
You may have read my earlier articles about Helen and her recent end-of-life experiences. We went with her over two weeks ago, when she left the end-of-life care at the hospital and was moved to Haven Hospice. Haven is rightly named, just outside Gainesville, Florida.
If ever you are in the Gainesville area, perhaps you could see the large, modern building that looks like a rambling, interesting and fine home. You could go inside and see the donated artwork, or perhaps buy one of the paintings. It would help the hospice. Or, you could leave a donation without buying anything. Or, just look around.
Haven is rightly named, situated on large beautifully landscaped grounds with flowers and greenery that surround huge towering trees. Some look truly ancient, outreaching and alive in remarkable steadiness.
Walkways, fountains, sculpture, sitting places, and pathways reflect, outside, the great care that goes on inside.
Our week there, I saw only one patient outside. But, oh, how the families are comforted by sitting or walking there. Many bricks are laid in memorials to loved ones. The staff also walk there on breaks. They see death up close almost every day.
When we were there with Helen, a young wife and mother died of lung cancer after a five month battle in hospice care. Some of our family members had spoken with the husband a few times, and offered condolences to the wider family, too, from Japan.
Words often are extremely inadequate to express the depths of feeling and experience that come into life. The more love, the more the depths of joys and sorrows. What a privilege love is!
I cannot speak yet of what our family shared with Helen. I could try, for it is not secret. But I cannot yet do it even half-adequately. I hope and pray that one day I may be able to share some of it with the life in it that we experienced.
One comment Helen made I will share with you now. The first night in hospice, the doctor could find no pulse in her feet. Her lungs were filling with more fluid. Near death, heart, lungs, and kidneys give special signs of dying's stages.
The next day, however, she became more aware of what was going on and where she was. She had someone with her all the time, usually three or four of us in the room or elsewhere in the building, finding things or seeking a nurse or aide.
At one point, she lifted her head to speak to the nurse helping her: "I'm ruining your reputation," she said. "They brought me here to die and now I'm getting better."
All of us there, from among her sons, daughter, daughters-in-law, and grandchildren, felt surprised at how aware she was. She enjoyed our quiet laughter, which was partly nervous reaction that she was so aware of what hospice means, in spite of her pain medications. Her show of spark told us that something we thought was a slight improvement for Helen might truly be a sign of a turnaround.
Her voice was slow and weak as she spoke. Her face looked gray-toned and she had only very slight movements, nothing grand. She was very tired, yet her wit and awareness came forth.
Six days later Helen's status went from "hospice" to "residential" within Haven. They began to talk to us of moving her quickly into home hospice care. We began to arrange to get her back to Maryland with us, where she lives when not visiting Florida family. Later that morning, we saw a young woman, with oxygen, leaving Haven with her dad. Checked out to return home. She was smiling big. Her gray-bearded father said he'd been with her through everything since she was born and would keep on being there for her.
We drove away from the hospice with Helen. It was a Thursday evening. My husband and I felt ready for an all night drive home. That does not mean we felt adequate for what we carried: our precious loved one, so weak; two oxygen tanks; and other apparatus that filled the floor of the back seat. Helen was stretched out on the seat, on a bed of sheets, and covered by blankets, with pillows helping.
Before we left, there were hugs all around. While we had been there, some staff had said, "I like coming into this room. You're all cheerful." Also, before we left, one of the chaplains had visited Helen for the first time. "I had to come and see the miracle they're all talking about," he told her.
We knew going in that leaving hospice alive is possible, although rare. But possible. We learned that one can live in hope and realistic acceptance at the same time. We know prayers are heard, whatever the outcome.
Like Helen, we felt better, too, as we left the hospice environment. We, too, had been helped. The hospice people and the outdoor environment, plus patient rooms with chairs that can turn into beds, a cafeteria that let us order our meals for only $5 each, and many other respites during long hours and days--all helped enormously.
Helen had had around the clock family presence, as well as close-by medical response in hospital and hospice. The palliative care of hospice days not only helped restore her, but we believe that love and prayer helped bring her through, from the beginning. Although she had prepared her funeral in hospital, and all signs pointed that way, we saw a different outcome.
To my oldest daughter who flew in from the northeast Helen said one night in hospice, "If I get through this, it will be love that brought me through."
Thank God for loving family and thank God for the comforting care of Haven Hospice in Florida. Thank God for a "garment of praise" He has given us in exchange for "the spirit of heaviness" that covered us when Helen was so near death.*
We do not know why Helen was granted improvement. We do believe that her work on earth is not done. Here is Helen's life verse from Scripture, Romans 12:1 ~
I beseech you therefore, brethren, by the mercies of God, that ye present your bodies a living sacrifice, holy, acceptable unto God, which is your reasonable service.
The next verse expresses how I have seen Helen, my mother-in-law, live: And be not conformed to this world: but be ye transformed by the renewing of your mind, that ye may prove what is that good, and acceptable, and perfect, will of God Romans 12:2.
If you want to learn more about hospice care, search the Internet for information. Hospice is for anyone in need of end-of-life care.
* From Isaiah 61: 3 - To appoint unto them that mourn in Zion, to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness ; that they might be called trees of righteousness, the planting of the LORD, that he might be glorified.
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Top-level comments on this article: (2 total)This is an amazing story, to see someone leave a hospice. I know that most of them are wonderful sanctuaries for those who need love and support. Unfortunately, it is the last place on earth that most people can call home. I visit many hospices, but only to remove the deceased. It is nice to hear that someone actually got to leave and go back home.Thank you for sharing this wonderful testimony with us.I doubt that many hospice patients are aware of the surroundings, yet I know we felt comforted by having her outside the institutional feel of the large hospital. Also, we noticed that hospice care immediately shifted to different approaches on her arrival. I still wonder if that gave her a window for improvement. It still is not easy for her, but at least she is at home. God bless you in what you do.
"The more love, the more the depths of joys and sorrows. What a privilege love is!" There never has been a truer statement.Jane, what a moving work you have done here, and what a joy to have come to the brink and pull back.My heart goes out to those personnel working in hospice care.Thank you for this article.Hi, Ken, Your thoughts toward the hospice personnel are very meaningful to me. They give tender care while trying not to form close attachments, with so much to carry on. Not only nurses but aides feel it, I think. It is so important to thank them often.
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