| 4/2/2008 1:00:00 PM | Email this article • Print this article | Dying patients more afraid of suffering than death
By JEANNE SCHRAM
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| Kim Olesen, left, and Lisa Ocker, right, visit with Muggs Nelson at her home in Aitkin. Muggs’ husband, Bud, died in January. Olesen, a social worker, and Ocker, RN/case manager are with HomeHealth Partnership. |
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| From left, Jadalyn, Ron and Kay Dehn; Jon, Kellan and Emily Miller; Tom Farah, Ed and Linda Farah; Liz, Bill and Drew Dean. |
| | A hospice volunteer is born ... | At first there were just small signs that things were not right ... some forgetfulness, difficulty getting up from a chair, a stumble now and then. The possible diagnosis kept changing as the symptoms changed - depression, Parkinson disease, early onset alzheimer's, possible lewy body disease, Creutzfeldt Jakob disease. After a thorough exam by Dr. Arnold we were referred to the U of M Adult Neurology Department where my husband Ed was diagnosed with Creutzfeldt Jakob Disease (CJD). My heart sank. I had educated myself on CJD and knew it was untreatable and always fatal. It is the same type of disease as Mad Cow disease in cattle, scappie in sheep and chronic wasting disease in deer and elk.
By the time the disease is diagnosed some patients have only weeks to live. We were lucky to have months. We actually were given five months from the date of that diagnosis ... five months to enjoy the time we still had with someone we loved so dearly.
Ed was a very quiet, gentle, humble man. He probably would wince at the thought that I'm sharing this with the public. But he also was a very caring man that always enjoyed helping people. So in that sense, if this helps people, he would approve.
As Ed's illness progressed, he required more and more care. He went from cane, to walker, to wheelchair. He went from struggling to rise from a chair by himself, to needing assistance to do that, to relying on a hoyer lift to move him. His coordination deteriorated which required help in eating. We all were determined to keep him at home as long as we could give him the care he needed. We never could have done it without outside help.
It was difficult to admit that Ed was dying ... that we needed hospice help. In my mind, Hospice = Death. But, how wrong I was. HomeHealth Partnership/Hospice = helping the living to live comfortably in their own home during their final stage of life on earth. Everyone associated with HomeHealth Partnership/Hospice treated Ed with love and respect, cheerfulness and caring. Erika Johnson was Ed's regular aide and Carol Wiherski was his nurse. Others would substitute on occasion and staff was always on call. We were always thankful for their presence. Because of the progression of the disease and the quickly changing circumstances, Carol would coordinate the care plan with the doctor. As supplies, equipment and medication were needed to make Ed comfortable, it only took a phone call from Carol. Rose Tiessen from Respite was another helper we welcomed into our home. Each of these caring people became part of our family ... helping us through this journey we were on. Ed's journey would be to leave his earthly life to enjoy his heavenly life with God. Our journey would be to be witnesses to that experience.
Relatives and friends were a tremendous help too. When Ed had difficulty sleeping at night, people took turns staying up with him. Visitors would come by to share conversation with Ed, even after he could no longer speak. Relatives would feed him and stay by his side so I could have a break. With all the help, we were able to care for Ed at home until his death.
It was nice having him home so that relatives and friends could stop in at any time, sit by his side, watch tv with him, visit, sing, pray, cry, laugh, hug, touch or just sit in silence. The three young grandchildren could crawl next to him on his bed and touch him. I'm sure he felt the love in his room and we felt peace through him.
Ed died on Aug. 5, 2004, at the age of 60. He died like he lived ... quietly, gently, humbly.
Some would say we lost him. We didn't lose him - we know exactly where he is.
Footnote: Because of the wonderful experience with Home Health Partnership/Hospice, I became a hospice volunteer. At their request, I now visit hospice patients in their homes. I always treat my clients as very much alive. They may be living with a terminal illness, but they are still living. My activities with them include playing cards, visiting, watching tv or just being at their side. If a patient sleeps a lot, I may help the caregiver with some things to ease his/her load. I've been there and know how much a caregiver needs care also. If you can help physically or financially, contact Home Health Partnership/Hospice. Much of their work is available because of monetary donations.
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Following is Part I of a series about death and dying.
After a person has been told he or she is at death's door, there are stages to pass through - denial, anger, bargaining, depression and finally, acceptance.
We will talk about some things you need to know if this happens to you or a loved one.
You just received the bad news. Your doctor told you your illness is terminal and you have about six months to live.
You are in shock and are about to enter the stages of grieving before you can accept the inevitable.
According to Dr. Mark Heggem, hospice director for Riverwood Healthcare Center in Aitkin, patients in this situation most want to know three things - how much time is left, will there be a lot of pain, and who will take care of them.
"I try to calm their fears and answer their questions," Heggem said. "I talk with them in person and be as compassionate as possible. It's hard to have to do. It's nothing taught in medical school or residency. Most of the people know it anyway."
Heggem also introduces the possibility of hospice early on. Hospice provides medical care, pain management, emotional and spiritual support to those with a terminal illness and their families.
Heggem has been the local hospice director since 1997, replacing Dr. Thomas Lawson. He serves primarily as consultant for the hospice team that includes social workers, aides, nurses, chaplains and volunteers.
"They were looking for a volunteer to be hospice director," he said. "I didn't realize then how special hospice really was."
In this position, Heggem has made house calls even as far as 50 miles away.
"I've gotten a different look at what patients' lives are like," he said. "I learn about their families and ultimately a lot about people."
He said that hospice patients are the most thankful of patients. "They're not afraid to die - but of the suffering," he said. "We want to help them be as good as they can for as long as they can."
To that end, hospice helps family members take care of the dying person to help make them as comfortable as they can be, generally during the last six months of life.
"The biggest challenge," said Heggem, "is getting patients into hospice soon enough."
Sometimes the delay is because family members of the dying person, who must provide the primary care, don't know if they can handle it. But, Heggem said, most go from being scared to embracing hospice.
"The positive experience as a physician and a human being taking care of people is personally rewarding," he said.
What do you do?
HomeHealth Partnership is a nonprofit service provided by Riverwood Healthcare Center in Aitkin and Cuyuna Regional Medical Center in Crosby. It offers home care, palliative care, hospice and Lifeline. Hospice services are paid for by Medicare, Medical Assistance, VA and most insurance plans.
There are two teams - one in the Crosby area and one in the Aitkin/McGregor area.
Employed by HomeHealth Partnership for three years, Licensed Social Worker Kim Olesen is on the team in the Aitkin/McGregor area.
After someone has been referred for hospice, a nurse from the team is the first to meet with the terminally ill person to gather information and assess the needs. Olesen usually visits next armed with information and resources for spiritual and emotional support and makes referrals when any of these are needed. Needs could include rides or Meals on Wheels. Medical equipment can also be arranged for. "If we don't have the resources, we try to figure it out," Olesen said.
"There's no one right way to do any of this," she said. "It's personal choice and their dignity is so important."
Olesen said that the hospice team does not hasten death nor does it prolong the life of a hospice patient. They provide comfort care only. "A lot of it is getting pain under control," she said. "And caregivers need a lot of support."
Following the issue of pain, hospice patients are concerned about their loved ones who are generally the primary caregivers at this time. Within the last year, Riverwood has added a hospice room to its facility when patients need it for a short time to control pain or relieve caregivers.
She added that it's surprising how joyful the time can be once people get things in order. "We don't talk about death and dying," she said, "but of family and memories."
"We need to tell the [hospice patient] 'we love you,' 'we will miss you,' and 'we will be OK," said Olesen.
Olesen echoed Heggem's concern about getting the services to people sooner. "There's so much we could help them with," she said.
The hospice team isn't finished when the patient has died. It offers a bereavement program up to one year after the death. A candlelight memorial service is held annually and family members receive a newsletter for a year.
Hospice helps about 60 patients and their families every year. Also, the palliative care program has been expanded in the last couple of years. This is a holistic approach to pain and symptom management to home care patients with a life expectancy up to two years.
Get affairs in order
Once a terminally ill patient has come to terms with a diagnosis, there are some things that should be done in order to relieve the burden on their families.
Harriet Veenker of North Woods Retirement Services is a Certified Retirement Financial Advisor with some sound advice.
Many of her clients are couples where the man has handled the finances and now he's old or has been told he is terminally ill. He has to decide whether his spouse can learn to manage the affairs or transfer his role to a financial advisor.
Most of the time, an advisor is brought in to manage the retirement nest egg, she said. "With any luck, we have enough time to get matters on solid footing."
Veenker said there are three things of top priority: a health care directive; a power of attorney and a will or trust.
Her best advice is "Given a choice of waiting until death is at your doorstep or choosing to talk with family members sooner about your wishes and desires, sooner is the better choice. Starting the conversation may be difficult, but completing it is a 'priceless' gift for those you love. Don't forget to formalize your wishes in your will and other estate planning documents."
You can help
To learn more about HomeHealth Partnership, call 1-800-698-2311. Volunteers are always needed.
Riverwood Healthcare Center also holds a hospice charity event annually - this year on July 7 at Ruttger's Bay Lake Resort. It's a golf event, dinner and silent auction raising funds for hospice.
Each fall, North Woods Retirement Services hosts legacy and estate planning sessions to answer estate planning questions.
Every time a bell rings ...
By EMILY FARAH-MILLER
I knew the news we would receive that day would not be good. My sister Liz and I sat in the waiting room of the University of Minnesota neurology department listening to patient names being called. All the patients looked very ill. Several were physically disabled, in wheelchairs; one was even brought in lying on a hospital bed. Liz looked at me with wonder and asked, "How can you be so calm?" "I don't know," I replied and didn't let her know I felt sick to my stomach.
After a couple of hours, my mom joined us in the waiting room while my dad underwent a spinal tap. I could tell she had been crying and gave us the news, Creutzfeldt - Jakob disease. Liz and I returned to the examining room with my mom and were introduced to two doctors who kindly shook our hands and asked us to sit down.
"Your dad has Creutzfeldt-Jakob disease and given his symptoms he will likely die in three months." I was unable to look at mom or Liz. I focused on the doctor and each word coming out of his mouth, "rare, brain disease, memory problems, tremors, difficulty swallowing, coma, death."
Death. It wasn't good news.
Creutzfeldt-Jakob disease is a rare and rapidly progressing brain disease. Within weeks, my dad became unsteady on his feet and lacked coordination. Later symptoms included rigid limbs, sudden jerky movements and incontinence. Eventually he lost his ability to move, speak and swallow.
Being told my dad had three months to live motivated me to give him the best quality of life in his remaining months.
First I needed to know what he wanted. We completed a Health Care Directive and dad indicated he wanted to stay home as long as possible. I knew that could not happen without in-home help and home modifications. Home care and hospice were called right away. We contacted the Aitkin county caregiver support program to arrange for respite to support my mom. We also contacted the Veteran's Administration since dad was a Vietnam veteran.
When we chose hospice we made a decision to not seek interventions that would extend his life. Instead, our hospice aide and nurse taught us how to care for my dad, the symptoms to expect as he neared death and how to make him comfortable.
Over the months, family, friends, and neighbors worked together to care for my dad. We took on unique and multiple roles: a case manager, cook, hair stylist, massage therapist and housekeeper. We read to dad, played cards, prayed and sang songs. My dad's three grandchildren, all under 2 years old, would sit on his bed, touch him and show him their toys. Over time he lost his ability to speak but his eyes told us he was still with us.
Five months after our appointment at the University of Minnesota, my dad died. He was at home, in his bedroom, surrounded by my sisters, my mom, myself and our hospice nurse. We watched and listened as he took his last breath. We held his hands, kissed him and said goodbye. Music was playing softly in the background and we heard a bell ring. I recalled a favorite holiday movie, and said, "Every time a bell rings an angel gets his wings."
My experience with hospice and caring for someone at life's end was rewarding. I have no regrets and do not wish I had done things differently.
Death is inevitable. Complete a health care directive and let your family and doctors know the care you want to receive at the end of your life. Download a directive at: www.managing.org/advisor/directive.htm.
Learn about the services available in your community before you need them. Call the Senior LinkAge Line at 1-800-333-2433. Learn about caring for someone at the end of life by checking the following Web sites: www.arrowheadaging.org/; www.nia.nih.gov/HealthInformation/Publications/endoflife.
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Reader Comments
Posted: Saturday, April 05, 2008
Article comment by:
Sally
Hospice of Aitkin Co should be given nothing but the highest honors given. I been able to work very close on several occasion with Carol and the Drs. My loved ones could not have had better care. Myself and my siblings could not have had better assistence with caring for Orin, Audrey and POP Richard Carr. Thank you all
Sally
Posted: Thursday, April 03, 2008
Article comment by:
G.J. Johnson
I’m glad to see an article like this being published. Having worked a Hospice program for a few years I know what a lot of the patients and these families deal with. Dying is part of life and talking about it even before a terminal illness strikes is so beneficial. I just wish there were more in favor of getting help in ending their lives when there is no hope for recovery! Being kept alive with tubes in every orifice of the body and not having the proper pain medication to keep them comfortable is no way to go out of this world. Too many religions put a quilt trip on folks for wanting to end their long suffering some way or with help from the medical profession. I read somewhere it does happen just talk Drs. in big cancer wards! I don’t want to hang around and find out first hand if this is true!
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