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Contents:


  1. Family Matters: The Money Squeeze
  2. Stories For Caregivers
  3. MemoryWell began with my father.
  4. Caring For Those Who Care

Now his dementia is severe, so I have to look after him constantly. God helps me, but now it is very hard because of my own health problems. It is like looking after a baby; the roles are completely changed, and he speaks very little. When my husband is at day care, I can go shopping or for a cup of coffee with my nieces.

I really enjoy these moments. In addition to day care, I have regular respite when he is in the nursing home. Then, I can sleep during the whole night and I do not have to rush. When he is at day care, I feel no guilt the way I do when he stays at the nursing home.

The hidden role informal caregivers play in health care

Our sons are supporting me; they say it is too hard for me to care for him at home. The staff at the day care service also tell me so. I know I will be fine if he moves to a nursing home, but I am afraid that he will feel abandoned. This wife struggles with two conflicting feelings. On one hand, she wants her husband to stay at home, but on the other hand, she has to accept letting him go.

This is a difficult process for her, and she seeks arguments and support to justify her feelings and her choices. Living separately seems to make life easier, but the risk that her husband will feel abandoned makes her insecure and vulnerable in this decision-making process.

Although using day care as a respite service is the best option for her, she is extremely tired and is in need of more respite than the day care can offer. According to Folkman, meaning-focused coping creates the opportunity for a person to act in accordance with their values and goals. These results are discussed in relation to three main themes:. Should they maintain and strengthen their emotional relationship with the person with dementia or let it go? They describe different relational and emotional coping strategies ranging from a desire for emotional closeness and a need to hold on to the connection to the need for distance and acknowledging the need to gradually let the relationship go.

According to the daughter in narrative 1, the new situation gives her an opportunity to fulfill her need for emotional closeness to her mother.


  1. [Full text] Meaning in family caregiving for people with dementia: a narrative stu | JMDH?
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The new intimacy motivates her to act in accordance with her values, which include being a good caregiver for her mother. By doing so, she simultaneously satisfies her own need for emotional closeness. The son in narrative 2 feels a sense of duty to provide care for his father despite the emotional distance between them — a distance he describes as expedient and rational in his role as caregiver.

This duty includes supporting and helping his father without taking revenge for the betrayal by his father he experienced earlier in his life. The emotional distance makes it easier to limit his involvement while at the same time do his duty in accordance with his own values. This son meets his obligations as expected by the community and receives gratitude from his father. The spouses in this study describe different relational changes. The wife in narrative 3 struggles to maintain emotional closeness to her husband. Her primary goal is to stay together with her husband in the marriage.

This goal motivates her to care for him even if she is stressed and tired. She describes a potential situation without this caregiving role as empty, lonely, and meaningless. The wife wants to fight for her strong relationship with her husband. To handle her challenges, she implements a daily schedule to fulfill her need for predictability and control. That schedule helps her in her role as family caregiver and brings their life under control. Similarly, the husband in narrative 4 introduces stricter routines and control for the purpose of maintaining the relationship.

By doing so, he intends to maintain their social network. He fulfills his need for a social network by taking responsibility for the housekeeping and invitations to social events. This process brings forth ambivalent feelings: In this process, she becomes sad when she dwells on the possibility that their long cohabitation could end. These five narratives demonstrate in various ways how meaningful relationships motivate family caregivers to act in accordance with their own values and goals.

All the family caregivers feel that the day care center positively influences the relationship between themselves and the person with dementia. Attendance at day care provides individuals with dementia with topics to discuss later with the family caregiver, and they are calmer and more satisfied on the days they attend day care. This leads to less nagging and conflicts between them and their caregivers. Hence, day care has a positive influence on the ability of family caregivers to cope in the caregiving role.

The family caregivers describe challenges connected to finding a balance between maintaining the needs of the person with dementia and taking care of their own needs. The Norwegian philosopher Pettersen criticizes the ideal of the altruistic, compassionate caregiver, 26 which has been the prevailing caregiving ideal throughout human history. Altruistic care is meant to be selfless and should be unconditionally based on spontaneous compassion and sacrifice.

Duty is a prominent motivator for family caregivers. However, how this value is expressed and justified varies. The son justifies his sense of duty based on values from his childhood inherited from his mother and grandparents. The emotional distance that he has from his father helps him balance his own needs with those of his father in an expedient way.

Placing emotional limits on caregiving helps the son provide so-called mature care. Mature care is a care philosophy meant to conceptualize care as a rational, not a monodirectional activity. In this conception of care, self-care is not by definition unethical, but a prerequisite part of ethical care.

The daughter in narrative 1 is motivated by her own needs for intimacy with her mother. Reflection might lead to new understanding and help the caregiver balance his or her needs with those of the care recipient. If meeting the needs of the caregiver is the main option, the person with dementia could suffer because of their total dependency on the caregiver and their limited ability to leave the relationship. However, the mutual need for satisfaction could balance the relationship. Hence, this philosophy violates the traditional altruistic care ideal, as it is based on communication between equal partners, information, expertise, and continuous reflection.

The mature care philosophy criticizes the altruistic care ideal based on the risk of negative consequences for both the caregiver and the care recipient. The family caregivers, particularly the spouses, describe how they prioritize the needs of the person with dementia over their own.

Family Matters: The Money Squeeze

They try to balance their own needs and the needs of the person with dementia, and hence maintain equal roles. According to Pozzebon et al, the process of losing a partner with dementia can be broken down into four phases: They alternate between adapting the situation by following strict routines and trying to accept more help from professional health workers.

Their shifting emotions include thankfulness, love, happiness, anger, powerlessness, and despair. Both women try to spare their husbands from experiencing their negative feelings. Being angry or sad gives them both a bad conscience. To cope with everyday life, regular morning and afternoon routines are crucial for the wife in narrative 3.

Having these routines fulfills her need for control and mastery of the situation. This study reveals that family caregivers have more time to attend to their own needs when the person with dementia attends day care. In all stages of dementia, support from day care staff is important to relieve family caregivers from feelings of bad conscience as they seek to meet their own needs. This is especially important in situations where they have to consider the need for home care or institutional services.

The family caregivers describe the relationships with the person with dementia as essential in their motivation for caregiving. According to the motivation theory, we are guided by our motivation when acting and making choices. Additionally, it refers to the processes that lead to the achievement of the goal. Intrinsic motivation refers to initiating an activity for its own sake because it is interesting and satisfying in itself, as opposed to doing an activity to obtain an external goal extrinsic motivation.

In their theory of self-determination SDT , Deci and Ryan focus on the differences between intrinsic and extrinsic motivation and describe three psychological needs that motivate the self to initiate behaviors that are essential for psychological health and well-being.

Stories For Caregivers

Relatedness refers to feeling connected to others and the capacity to receive feedback from them. It is important for them to be able to choose the actions that are necessary to achieve their value-based goals of caregiving. As previously described, respite gives family caregivers more energy and patience in their complex caregiver role. They become more competent as caregivers.

In Norway, the municipalities offer classes for family caregivers where they receive information about the health care system and their rights and learn about dementia and communications skills. Additionally, caregivers are offered support groups run by trained health professionals. Individual guidance from day care staff could be a complementary supplement to the classes for family caregivers. According to SDT, the relationship between the person who provides support and the person who receives support is an essential effective factor.

The family caregivers describe how their feeling of duty affects their actions in different ways and with varying strength. This feeling of duty is related not only to their personal values but also to the values and expectations of society. Through this feeling of duty, the family caregivers describe how the aim of the action motivates them to care extrinsic motivation more than the action itself intrinsic motivation. As per the SDT, the activities motivated by intrinsic motivation are activities or situations in which the activities themselves are the primary motivating factor.

The family caregivers describe how day care enhances their chances of having several good moments together with the person with dementia, for example, having a pleasant telephone call, a nice meal, or emotional intimacy.


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  • Activities based on intrinsic motivation are more rooted in the integrity of the person than are activities based on extrinsic motivation. That increase reflects medical advances and the resulting increase in human longevity. As the average age of death has moved from 68 in to nearly 79 now, the ranks of the elderly have grown.

    Today, about 6 million U. As a result, the personal cost of caring for the elderly at home is rising — in terms of lost wages and diminished pension and Social Security benefits, the MetLife study concluded. Studies estimate that 2 out of 3 informal caregivers are women, many of whom are middle-aged mothers with children or adult children living in their households. The cost of putting a parent into professional assisted-living care can be daunting. But the cost of keeping a relative at home can be very high too. That figure reflects the wages lost while not working — typically for about five years — as well as lower wages after returning to the workforce with rusty skills.

    MemoryWell began with my father.

    When foregone pension and Social Security benefits are counted, the out-of-pocket losses roughly double. The people who drop out of the workforce "can jeopardize their future financial security," the study concluded. Hunter has discovered just that. She quit her job to become an in-home helper for her year-old grandmother, Ida Christian, who has Alzheimer's disease.

    Christian lives with her daughter, Geneva Hunter, 66, who runs secretarial operations at a Washington, D. Yolanda Hunter has an apartment a few minutes away from her mother and grandmother. Ida Christian gets help from her granddaughter, Yolanda Hunter left , in blowing out the candles on the cake celebrating her 89th birthday. Like many other caregivers, Yolanda Hunter thought the "job" of watching over her grandmother would not last all that long.

    Her thoughts at the time she quit her job: Her goal was to find a good home nursing aide to help her grandmother so that she could jump back into the workforce. But two-and-a-half years later, it "didn't quite work out that way," she says. Although Christian's savings are enough to provide a modest salary for her granddaughter, the amount is not great enough to allow Hunter to prepare for her own retirement.

    So Hunter had to switch gears again and begin trying to re-enter the labor market at a time when nearly 13 million other people also were seeking work. As this year began, she said she recognized that "I desperately want to get back to work, because I'm mentally tired and I feel — unless I win the lottery — I feel like I'm missing out on so much in terms of my future and making sure I have a stable future.

    But then again, "there's that part of me that is very, very torn about leaving her, because no matter how compassionate the next person may be, they're not going to do the extra things that you're going to do," she said. Some women's groups say Congress should expand tax credits available to people with dependent relatives and create "caregiving credits" to limit the Social Security penalty for time spent out of the labor force to provide family care.

    The Caregiver Credit Campaign , an advocacy effort, says such help is warranted because without voluntary caregivers, "hundreds of billions of government dollars would be spent on alternatives like institutions. My father was diagnosed with Alzheimer's when I was still in college. I became his primary caregiver when my mother died six years ago.

    I quickly discovered I couldn't handle his needs, and I had to put him in a care home.

    When I did, they asked me to fill out a page questionnaire about his life. I was a journalist, so instead I offered to write my father's story.

    Caring For Those Who Care

    I wrote his story simply, just one page, and it transformed his care. Two of his nurses were Ethiopian and they hadn't known that my father had spent four years there early in his career. They were delighted that he'd known Emperor Haile Selassie and they'd sit for hours showing him photos of their home country. He also loved it; he might not have remembered the previous 30 years, but he remembered his early 20's in Addis Ababa.

    For him, it was like being there. We strive to replace those clunky, painful questionnaires for everyone entering long term care. And for anyone who has ever spent time in such homes, you'll know: Everyone has a story. Let MemoryWell help them tell it. Each of our stories are relatively short—just one printed page. We designed it this way so that they can be printed out and put into carelogs, or laminated and put on walls. A brief snapshot like this has so many uses.

    Anyone can engage quickly with a story. Sure, there are t-shirts and squeezable MemoryWell brains. But, mostly, we want to give you back your own stories. To help us in this endeavor, we have enlisted an all-star roster of journalists. We are a team of journalists and entrepreneurs committed to storytelling. We have a network of more than journalists across the country and can work anywhere, as most of our interviews are done by phone.

    Most of us have a personal stake. As journalists we love this. We want to preserve those stories, not just for their kids and grandkids, but for us. So that anyone doing World War II or Korean War research might find a trove of first hand accounts in MemoryWells, or people who were at Woodstock might compare notes 50 years later. Stories are what make us who we are and if we lose them, we never learn from them. She's covered stories on five continents and written nearly a dozen TIME covers.

    Theo is a skilled operations executive who has managed complex projects for corporations, nonprofits, and the U. He believes that the best way to contribute to any enterprise is to know your own strengths and to put them to work in service of something that excites you. He joined MemoryWell because he was excited to help build a product that might help bring some peace to families and caregivers.

    We are young, but mighty. We first launched nine months ago as a business-to-business company, selling our stories directly to the communities we knew most needed them.