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The "Full-Meal Deal": Families Talk about Hospice

For National Hospice Month, two local families reflect on how hospice helped their loved ones die at home.

By Prashant Ziskind

 

"Isn't it awful? I took care of you and now you take care of me," said David Baker, age 88, suffering from dementia and terminally ill with a brain tumor and prostate cancer, to his daughter, Silver City resident Lynette Lockwood, in one of his periods of cognizance.

"No, dad," replied Lynette. "Being able to exchange the care is the greatest opportunity you've ever given me."

Months later, Lynette and her husband Bill Windsor are in the garden they planted for Lynette's father, where they are watering the roses he loved. Sparked by November's National Hospice Month, they talk about the experience they had with the two months David Baker was cared for by the Gila Regional Hospice program before he died in April.

Bill Windsor and his wife, Lynette Lockwood, stand in the garden planted for her late father, David Baker, who died at home with care from the Gila Regional Hospice program. (Photo by Prashant Ziskind)

"I think it's a God-given opportunity," says Lynette. "It's a privilege that was taken away from families years ago when we started putting our loved ones into the hospital to die. Before that, family members passed at home. There was comfort there. There was closure there.

"When we saw people pass, we knew that it was going to hurt because we would miss them, we would have the loneliness of that spot in the family that was empty. But there was no fear of knowing what death was. Death was part of life."

Lynette is actually describing a major trend since the development of high-tech medicine at the end of World War II. Increasingly, death has moved from the framework and comfort of the family home to the high-tech world of hospitals, with the accompanying assumption that dying is best left to the "experts."

The hospice movement within the US and other countries is a rejection of that assumption, aiming to bring the end-of-life passage back into the bosom of the family. Hospice provides a team of professional caregivers (a medical director, nurses, certified nursing assistants, a credentialed bereavement counselor, social workers, chaplains, homemakers) and volunteers to provide care and support for the terminally ill patient who decides he wants to die at home rather than in a hospital setting. Hospice also provides training and support for the caregivers and family involved.

Hospice is an idea whose time has come — again. According to the National Hospice and Palliative Care Organization, which marks the 26th anniversary of National Hospice Month in 2007, more than 950,000 dying Americans received care from the nation's 3,300 hospice providers last year. That's an increase of 22 percent since 2001.

"I think nothing is more beautiful than having a family witness the birth of a child and the passing of a loved one, because then they know the generations go on," Lynette continues. "If the whole family is involved in the passing, the passing is not only more acceptable for the individual, but the family becomes more accepting to their own end — especially here in America, where we tend to think we're endless."

Bill and Lynette wound up selling their home so they could move in with her father and watch him closely. "He couldn't remember how old he was," she says. "He wasn't taking his meds. To put it bluntly, he was afraid to be alone.

"My dad required constant work and with my disability, it's difficult for me. He fell 21 times because he refused to use his walker. I can't lift. I had to ask Bill to help me. My dad already had a pacemaker and diabetes and I had to keep him from wandering off."

Lynette, who graduated from Southwestern Medical Society Academy of Medicine in Phoenix and was a surgical technologist for many years, knew her dad was entering the terminal phase of his life. But she says her medical background did not make it all that much easier for them.

"He was not my patient. That was my father," she explains. "I used all of the tools I had, my education and my experience, but when it came to my father, it was completely different. I loved him so dearly.

"An individual does get extremely tired. The person is trying to do the best that they can for that family member and whether you're educated in medicine or not educated in medicine, the bottom line is you need assistance. I don't know how other people in the medical field feel, but I questioned my own capabilities constantly. Was I doing the right thing? Was I saying the right thing? Was I cooking the right thing? It was constant."

Anxiety goes with the territory, medical professional or not. The mandate of hospice includes not only dealing with the patient's physical pain but also with the emotional and spiritual distress often present in both patient and family members.

"Hospice relieved my anxiety," says Lynette. "I think they gave all they had to give. There was no reservation and I think I'm a fair judge of that. The GRMC Hospice was exceptional because I knew that I had people available to talk to 24/7, whether about my dad or if I needed to talk about my own personal feelings.

"They were so professional. I felt supported. I didn't feel they were making any decisions for me. They would ask me if I agreed with the treatment. Everything was discussed. The options were given to me. Everything was at my consent. There was no trying to pressure me into anything and I appreciated that."

Pain control was a bit challenging, but not because hospice hadn't offered, she adds. "My dad was a very rugged man. He won a Bronze Star in World War II. He never complained and I know that he had pain. He wouldn't take much pain medication because at that point he was hallucinating and he said the other soldiers needed it, that his wound wasn't that bad."

Even the volunteers — who weren't "professionals" — acted professionally. "Richard Beck and Betty Conner came," says Lynette. "I tell you, those two people are miracles on wheels. I had to go in for one of my heart examinations and Betty stayed with Dad all day long until I got home at 10:30 at night. She will never know what an angel she was.

"Richard talked to my dad about his past employment. He kept him mentally involved. Then when Dad's nap time came, he was quiet. He played with the dog and the next day Dad told me, 'That guy is a good guy cause the ol' dog liked him.'

"It seemed like my dad knew they were volunteers. He said, 'You know, I could tell they weren't getting paid to do that 'cause they took all kinds of time trying to talk to me, to listen to me and they didn't have to go here or there.' He was comfortable because he knew they had my phone number."

Spiritual support for the family came through several doors. David Baker had his own pastor whom he visited with and his own faith. In addition to that, the hospice chaplain, Gale Green, was deeply involved.

"Dad was glad I had someone to talk to," says Lynette. "She did not express sympathy. She expressed empathy. Sympathy is when you connect to that person and you take on their pain. In a way it's self-pity. Empathy is understanding how the person feels, accepting those feelings and helping that person to deal with them.

"My dad had his religion. He received visits from his pastor regularly and received holy communion, but if I needed to take Gale's hand and pray, it was there. There wasn't any religion involved. It was so spiritual. It was simply talking to God with another person who was not of my faith but who accepted my prayers as hers."

So many of us seem to be afraid of witnessing death in our culture, but this was the time that Lynette and Bill most cherish in memory. Lynette recalls, "The night that my dad passed, Dr. (Thomas) Hickey came and he stayed. The hospice workers came and they comforted me. And they gave Bill a kind of comfort I couldn't give right then. I admired that so much.

"When the end came, Bill was holding Dad's hand and he had told me to go lie down. We had a bed right next to Dad so we could watch him. I had just stood up and turned around and Dad passed. Bill told me Dad had squeezed his hand. He told him goodbye. It affected Bill so deeply because he was so attached to Dad. The hospice workers told him they admired all he was doing to help because he didn't have to. Bill felt so comfortable with them.

"One of the things I most admire about the whole team," Lynette goes on, "is that I worked for many years and I know that people have conflicts. That's normal in a working environment, but it was never, ever expressed in any way if they had any in their communication with us. I kept waiting to see when one was going to let go but there was none of that. They supported each other fully. I think that was very admirable."

She sums up, "The last thing I want to say is I wish so deeply that people could realize how wonderful it is to have the opportunity to take care of your loved one during their terminal time, because they pass with someone they love and that means everything."

 

Randi Halperin Olson had no medical background when she and her husband Rich were considering hospice for her mother, Anne Halperin, who was terminal with congestive heart disease.

"The decision had to do with my mom," Randi recalls. "She was so tired. She was very, very aware of what she was doing until she had a stroke. She knew how she wanted to die. She was adamant that she didn't want to go into a nursing home. I didn't agree with her decision initially because I thought she could take better care of herself and extend her life, but she would say, 'For what?' At that point she was 91 years old. 'I'm tired. I'm tired. I've had enough,' she repeated."

Randi had a close relationship with a friend who was her mother's age and after many conversations with her, she arrived at a new awareness. "At some point it hit that this wasn't about me and what I want for my mom. This is about what my mom wanted for herself.

"My mom finally said to me, 'How would you feel if your darling children told you what you could do?' And I said, 'You win.' I was looking at it from a daughter's point of view, not wanting to let go, wanting to keep her as long as I could — for me. And when I realized it wasn't about me, then that was it. Then it was OK. Then every decision she made after that, such as stopping her medication, I supported fully."

Randi knew something about hospice, that they were brought in for end-of-life services, to support the patient and the family. "But in terms of the kind of support," she admits, "I had no clue. Later, I came to know that I was part of the process, too, that the family is very much part of the process and that the family needs support.

"What encouraged me to keep Mom at home was humanity and compassion for my mom. I didn't want her to be in a nursing home, either. I didn't want her surrounded by strangers. I didn't want her last moments on earth to be surrounded by people she didn't want to be with. I wanted her to be in an environment that was loving, that was caring, that respected her, that treated her with dignity, and I would have done anything in my power to make that happen for her."

Because of her lack of medical experience — Randi was last a case manager for Big Brothers/Big Sisters — she had a fair amount of anxiety about taking care of her mother. "I had no idea what I was doing. Hospice was so helpful in reassuring me that I wasn't crazy and in giving me some tools to deal with it, which I used and still do. With the services available through hospice, I didn't need a medical background at all.

"If someone didn't know what to do, that's what the 24/7 phone number was for. And when I called for help, if I was not able to administer that help myself with them talking me through it or wasn't comfortable with it, then somebody came out here. There was never a moment, if I said I was uncomfortable with something, that anyone pressured me to do it. It was great."

The challenges that ensued were different for Randi than for her mother. "For my mom, waiting to die was the most challenging. She wanted to go. She was ready. She would say to me, 'Why am I still here?' She consciously made a decision to stop all medications about a week after she was admitted to the hospice program. For her, being alive was a challenge. My brother was not in agreement, but she had the right to make the decision for herself and she did."

Randi continues, "The biggest challenge for me was physically taking care of her. The roles had reversed and yet they hadn't. I was taking care of her but I wasn't her mother, though I was having to act like one, and it was just a very difficult place to be. I didn't want to take away her dignity, but at the same time I wanted to keep her safe. That line is very fine.

"Mom wasn't independent any more and it was so very real to her. For her all that stuff was tied up together, so that hospice allowing her that decision-making and respecting those decisions gave her bit of control over her life.

"I'm not at all sure that I would have come out of this the same way had I not had the support and care giving of hospice," Randi says, citing counseling by chaplain Dana Patrice, bereavement counselor Chris McIntosh, chaplain Gale Green and volunteer Karen Muench.

"Jim McIntosh, her nurse, was wonderful. Jim is elevated to sainthood for me. Jim and my mom had a very interesting relationship. She loved Jim. He was so good to her and good for her, because of the respect he treated her with. Total respect for her decisions because she was not incompetent. At that point I said, 'Mom, whatever you need is yours. I will support you.' Which both of us did."

She remembers how her mother had very dry skin and McIntosh would put a little cream on his hands and massage her feet. "He has no idea what those little touches meant to her. He was so gentle with her. She just thought he was the most wonderful thing."

Chris McIntosh, a bereavement counselor, would bring material for Randi to read. "We would talk about how to deal with my mom when she got difficult," she remembers. "Also about the stages of grieving, even though she hadn't died yet, but all the things that you go through. We talked about how I could deal with my stress of caregiving because I was 24/7. My husband Rich and I took care of everything. The talking, the counseling, gave me tools."

Those tools included spiritual help, if Randi wanted it. "Chris had suggested to me, because I was absolutely at rock bottom at one point, to talk to one of the chaplains if I felt comfortable with that. Let me explain. I am Jewish. I had an image of someone walking in with a big cross around their neck with a Bible in their hand and wanting to take over my life. I was so low I thought, 'OK, I'm going to give this person one shot. She can come because I'm so low, I'll take anything right now.'

Chaplain Dana Patrice was not at all what she expected, Randi concedes. "We talked and we talked and there's such a peacefulness that surrounds Dana, such a cloak of serenity, that it helped. The tricks and the tools she would teach me to deal with stress. . . . She was just a breath of fresh air and just what I needed at that moment. She's a wonderful lady. . . . I didn't know if I was losing my mind sometimes with some of the thoughts I was having. She just assured me that the process that I was going through was very normal under the circumstances."

Hospice suggested the Halperin family fill out the advance directive called the Five Wishes so they would be totally clear about what Anne wanted for herself. "Mom put everything into the Five Wishes," says Randi. "What a wonderful document. We sat down with her, went through the whole booklet and talked about everything she wanted. . . how she wanted to be remembered.

"Gale (Green) and I talked about it because Mom was absolutely adamant about not wanting anything religious. She wanted a celebration of her life. Since my mom loved jazz music and had lived in New Orleans for 25 years, we decided on a jazzy event. I talked to Mom about the ideas and she said, 'Well, I want to be there. Could we do a preview? Can I hear the music and everything?' I cannot tell you how many people came up after the celebration and said, 'That's the way I want to go!' We had music, we had food and stories about Mom, and it was just perfect. It was totally and completely her. Mom got to pass the way she wanted to. I feel so good about that!"

It is a good memory for Randi because it hadn't always been so good with her mother. "My mom and I had a difficult relationship," she says. "We were adversarial for many years. Having her with me in a situation where she was so incredibly vulnerable, we got to say things to each other that we never ever would have said. . . good things.

"I feel like I grew so much through the experience with hospice, that if hospice hadn't been involved, I wouldn't have had the tools, the support, to have come out of it the way I did come out of it — which is missing my mom but not overwhelmed about whether I made the right decisions or not. I did the best I could do and I felt like I got so much respect and support for what I was doing that without that, I would have also wondered, 'Did I do the right thing for her?' I don't think I'd be in the place I am today without hospice. They're the full-meal deal!"

 

For more information about Gila Regional Medical Center Hospice Program or the next hospice volunteer training in the spring, call 574-4934. For more information on hospice care from the National Hospice and Palliative Care Organization, see www.caringinfo.org.

 

Prashant Ziskind is GRMC Hospice Volunteer Program Coordinator

 

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