YOUR FELLOW PARTICIPANTS — #5 Clare

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Clare, 73, and her husband, Charley, have been married for fifty-three years. They have four children, nine grandchildren, and five great-grandchildren. Clare’s leukemia, which was in remission for over ten years, has recurred. This time it is considered untreatable. She has decided to forego any of the heroic, life-sustaining measures for which modern medicine is so famous. She and her doctors agree that hospice is her best option. “I’ve done my homework. I’ve shopped around. I interviewed all the hospices in town and have chosen the one I feel will honor my wishes for the kind of end-of-life care I want.”

Clare has lived a rich and full life. “I was a career woman long before there was such a thing as a career woman. I’ve always been a take-charge kind of gal. This leukemia may very well kill me, but it will never get the best of me.” Her illness has made her very frail. Her skin is almost translucent. She has an otherworldly look about her, but there is no mistaking her remarkably robust spirit.

Her youngest son Stan, her one and only ally in the family, brought her to the interview and will see that she makes it to each meeting. Stan says, “Oh yeah, she’s feisty all right. There’s no flies on her, and the ones that are there are paying rent.”

Clare’s an avid pantheist. “God is everywhere and in everything. I have always had a close and abiding relationship with God.” Her faith has sustained and comforted her all of her life and she is at peace.

Clare’s biggest concern is her family. They are pressuring her to fight against death even though she doesn’t want to. She wishes that they would join her in preparing for her death rather than denying the inevitable. “I worry about how they will manage when I’m gone. And even though I’m ready to die, I feel as though I need their permission before I can take my leave.”

YOUR FELLOW PARTICIPANTS — #4 Raymond

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Raymond, 50, is a social worker employed by a home health care agency in San Francisco. He is thinking about applying for a position in the agency’s hospice program, but he’s not quite sure he’s ready for the responsibility. “I need to better understand my own feelings about death and dying before I can hope to assist anyone else.” He hopes this group will help him do this. “If I’m going to do this work, I want to do it well.”

Raymond’s mother died of ovarian cancer when he was seven years old, but he never really processed the loss. Now a dear friend of long standing, Joann, is also dying of cancer. Joann’s imminent death has opened the floodgates of his unresolved grief associated with his mother’s death. “I’m both drawn to Joann and repulsed by her all at the same time. And she knows it. It’s so crazy. You should see me. I’m confused and disoriented, which is not at all like me.”

Raymond says that his interest in this group is strictly professional. “I don’t have a life threatening illness myself.” But upon further investigation, Raymond reveals that a recent visit to his doctor disclosed that he is at high risk for heart disease. Raymond is considerably overweight. “I guess I’ve pretty much let myself go to seed. I’ve always been a big guy, big-boned, as my mother would say, but now I’m just Fat with a capital ‘F’”. The heart disease news, while shocking, didn’t come as much of a surprise.

Three years ago Raymond went through a very acrimonious divorce. “My life shattered before my eyes.” His three children, two girls and a boy, live with his ex-wife in another state. He gets to see the kids only on holidays and for a month during the summer. “After the divorce, I just didn’t care if I lived or died. I ballooned. I put on over a hundred pounds in a matter of months. Hey, wait a minute. Maybe that’s why I’m considering this hospice move, and why I’m so ambivalent about Joann, and why I want to do this group. Maybe I need to recover a sense of meaning for my life.”

YOUR FELLOW PARTICIPANTS — #3 Holly

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Holly, 43, is a breast cancer survivor. She has been cancer-free for three years. She’s a graphic artist, shares a home with her partner of ten years, Jean, and their teenage daughter Annie.

Holly is a splendid figure, nearly six feet tall, weighing over 200 pounds. She is as soft-spoken as she is imposing. A beautiful smile radiates from her full face. Oodles of thick jet-black braids spring from her head as from a fountain gone mad. She is forever brushing one or another of them from her face as she speaks. Her frequent laughter is like music, making her whole body dance and shake, but her levity masks a somberness and apprehension that is very troubling to her.

”I often become consumed with worries about getting sick again. My fears can turn into a paralyzing dread that takes days and sometimes weeks to shake. I know that until I can accept the possibility of my own death, I’ll never be able to embrace all the great things that are right in front of me.”

For therapy, she spends hours tending ten different varieties of roses in her immaculate garden. “I lose myself there. The rich earth soothes my troubled soul.”

Her church is a second home for Holly. It always has been. “I was raised in rural Georgia. As a child, my momma took me to this little makeshift church in the woods near the river. It had no heat in the winter, and come summer, why honey, you’d about roast. The Oakland church I attend now has both heat and air conditioning, but child, the singing and preaching still can raise a cold sweat on me.”

YOUR FELLOW PARTICIPANTS — #2 Michael

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Michael, 52, was diagnosed with multiple sclerosis three years ago. Since then, he has been confined to a motorized wheelchair. This past year he has had several MS-related setbacks that have kept him bed-ridden for several weeks at a time. Things have become so difficult that two months ago he was forced to sell his once thriving law practice. The few hours of work he can manage a week at his old firm are more frustrating than fulfilling for him. And Mike is often depressed. He continually repeats his self-defeating mantra: “I’m not half the man I used to be.” The return of his beloved Raiders to Oakland, the super-human support of his second wife, Maryanne, and their son Kyle are the only things that keep him from self-destruction.

An exasperated Maryanne accompanied Mike to his intake interview. She tearfully reported how Mike’s smoldering rage and bouts of sullenness terrorize the family. “I love him, but he’s gotta get off his pity-pot or I’m gonna walk, and take Kyle with me.” Mike sheepishly acknowledges his disruptive behavior. His ruggedly handsome face distorts with shame. “It’s not me. It’s this damn MS. I just can’t seem to get it together. I feel like such a failure.”

Even though he thinks participating in the group is an admission of defeat, he promises his wife that he will give it his best shot. This soothes Maryanne. She hugs him and promises to help in any way she can. “We’re in this together, babe.”

Care homes ‘deny elderly people sex’

Care homes often deny elderly people the basic right, and one of their few remaining pleasures, to continue having sex, according to a new study.

Many older people, including those with early stage dementia, enjoy sex while they live at home, but this changes once they move into residential care, said the Australian authors of a paper in the Journal of Medical Ethics.

They blame a lack of privacy, age discrimination and fears about the legal implications should a patient be found mentally incompetent to give consent.

“The formation of relationships, physical intimacy and the expression of sexuality are a basic human right and a normal and healthy part of ageing,” wrote the authors from the Australian Centre for Evidence-Based Aged Care.

Yet most facilities do not have formal policy guidelines or staff training aimed at allowing residents to continue being sexually active.

“Privacy remains a problem, with residents often not able to lock their doors and most rooms equipped only with single beds,” said the paper.

“For residents with dementia, sexuality is viewed with even greater anxiety, either being labelled ‘inappropriate’ or a ‘challenging’ behaviour or as a risk to the resident.”

The team acknowledged the difficulties in determining the legal threshold for informed consent in elderly patients with dementia, but argued this should not be an excuse for denying them their rights.

“It is important to remember that dementia is defined in stages, with early or mild dementia manifesting as mild forgetfulness or confusion that is often mistaken for a normal part of ageing,” they wrote.

“Clearly there is a significant difference between the capabilities of a person with mild dementia and one with advanced or final-stage dementia and, therefore, a single approach to sexuality and ‘people with dementia’ is inappropriate.”

Complete Article HERE!

YOUR FELLOW PARTICIPANTS — #1 Janice

I’d like to offer you a sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Janice, 62, has late onset diabetes and rheumatoid arthritis. She is a neatly dressed, silver haired woman with gnarled hands and feet. The thick lenses of her glasses sit heavily on her pleasant, open face. She is of medium build, and walks with the aid of a cane. She has the shy, nervous demeanor of a young girl, often absent-mindedly fidgeting with the buttons on her favorite mauve sweater.

She is a Red Cross volunteer and a recent widow. She was raised a Methodist in, Alton, Illinois, a small town just across the Mississippi River from St. Louis, but she currently has no religious affiliation. “I miss not having a church to attend. At least the social part of it.”

Her husband Albert died in the hospital of congestive heart failure 18 months ago. Albert’s sudden death dramatically changed her life. She was forced to give up the comfortable home they shared for nearly 30 years and now lives alone in a modest apartment in a subsidized senior housing complex.

She says she is often alone and lost in her profound grief. “Our marriage was a traditional one, the kind that was popular fifty years ago. Albert was solely responsible for the family finances. He shared little of the intricacies of these things with me. I’m afraid that he kept me completely in the dark about all of it.” Albert withheld their troubled financial situation from her in order to shield her from the unpleasantness. He died without a will or an estate plan, leaving Janice completely lost and befuddled.

Albert died in intensive care and Janice was unable to be with him when he died. She has a great deal of guilt about this. She claims that her biggest fear is “dying alone in some awful hospital, hooked up to a bunch of beeping machines.” However, she’s just as anxious about becoming dependent on strangers. “You see, I’m losing my eyesight to the diabetes.”