09/30/17

How to Cope with Anticipatory Grief and Ambiguous Loss

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What to do when the person you are grieving is here but not here

By Cynthia Orange

The longer we live and the more we experience, the more we find ourselves in the cracks between joy and contentment on one side of life’s continuum and grief and loss on the other. Children leave our nests, we move from vocations to avocations — from retirement to, as a dear friend puts it, “re-aspirement.” Addresses, relationships, bodies, even spouses, can change. More loved ones get more serious diagnoses. Sometimes we get dreaded medical test results ourselves.

When someone dies, the loss seems clear. But what about those times when grief is anticipatory — when the diagnosis is terminal and we grieve the inevitable? Or times when the loss is ambiguous? Perhaps a parent shows signs of dementia, a son or daughter in the military is missing in action or returns from combat with PTSD (post-traumatic stress disorder) or a dear friend has a serious stroke. Maybe a loved one is in the throes of addiction. What was has changed, replaced by uncertainty.

When You Are Caught in ‘Frozen Grief’

University of Minnesota emeritus professor and family therapist Pauline Boss, author of Ambiguous Loss, calls this state of complicated loss “frozen grief.” A loved one might be physically present but psychologically absent, as in the case of Alzheimer’s or other mental disorders. Or he or she might be psychologically present (to us) but physically absent, as in the case of a child gone missing or a tragedy like 9/11 where many bodies were never recovered. More common situations like divorce, adoption or estrangement can also cause confusing feelings of ambiguous loss.

We are a society that doesn’t do well with ambiguity. We want clarity. We want steps to acceptance. We want closure — a concept that makes me want to tear my graying hair out! Grief is a messy process, and ambiguous loss even messier.

“My point is very different, that ambiguous loss is a complicated loss, which causes, therefore, complicated grief, but it is not pathological. . . it’s a pathological situation,” said Boss in a 2016 interview with Krista Tippett, host of Public Radio Exchange’s On Being.

Boss, and those in the therapeutic community who have embraced her ideas, give us permission to ride the waves of this type of loss without feeling pressured to “just move on,” as so many expect us to do. Instead of feeling alone in a state of “bewilderness,” we learn that the pangs of grief we have when someone is here — but not here — are normal.

Her Mom’s Wish

As I wrote in my recent book, Take Good Care: Finding Your Joy in Compassionate Caregiving, a woman in my caregivers’ group beautifully described how it feels to ride this sea of rolling emotions:

Mom was in a memory care facility but still willing and able to have us take her out for special occasions. After one Easter family dinner at my house, Mom thanked me for the nice meal, commented on our nice family, then said, “Do you know what I wish?” “What, Mom?” my sister and brother and I all asked. “At times like this, I really wish I had children.”

We are still able to laugh about that memory; sometimes with Alzheimer’s, that’s all you can do. Then you go off to another corner of grief and look for the cracks of light — she still responds to hands that hold and hugs that enfold. She still likes to sit outside and look at the flowers. So here we are. But we are so ready.

A friend of mine compared ambiguous loss to water. Water can run through your fingers, but it can also become ice, still and solid.

“Water, not water, yet water,” she said. Her words helped me deal with the flood of emotions that overwhelmed me when my father was diagnosed with terminal cancer. “Dad, not dad, yet dad,” became my mantra before and after his death.

Your Unique Grief

As these anecdotes demonstrate, loss is as varied as the people who experience it, and we deal with it differently.

“The only expert on grief is the person experiencing a particular loss at a particular time. You,” writes Tom Ellis, a licensed marriage and family therapist and author of This Thing Called Grief. “Grief is so personally unique and changing that getting your mind and heart around it once and for all is impossible. Just when you reach a place of understanding, it changes again…. Despite this dilemma, there is value in gathering as much information as possible, in pulling together some tools to help.”

Tips for Coping

Here are some suggestions for people supporting someone, or those in the midst of their own ambiguous loss:

  • Don’t pressure yourself or others to “just move on.” As a therapist friend once told me, there is no closure for this type of grief — you just learn to carry it differently.
  • Be tender with yourself and try to take comfort in the knowledge that your feelings are normal. However, get the help of a qualified professional if your feelings overwhelm you to the degree they affect your ability to function or if you seek to escape them through addictive or harmful behaviors.
  • Seek support from family and friends who love, affirm and listen to you with open mind and ears and non-judgmental hearts.
  • Set and maintain appropriate and respectful boundaries. Although well intentioned, some caregivers tend to swoop in with answers or directives, when the best they can do is be with you in your ambiguity. As Ellis points out, “Loss is the problem, not you.”
  • Loss and grief can take their toll, so self-care is extremely important. Exercise, meditation, nature, journaling, play and laughter can all help. We each have different balance points and tipping points, but we can usually sense when things are out of balance.
  • Ask for, and accept, help when needed and offered. Let friends garden or clean for or with you. Let them take you to dinner or watch your children. So many caregivers have told me what a gift it is to do something to lift the burden or spirits of someone in need.
  • Make room for grief and loss, but try to take time each day to notice the beauty that surrounds us.

Each of our stories is unique, so the way in which we process loss will differ. But it is important to remember that we do not travel alone.

Complete Article HERE!

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09/29/17

Walking hand in hand: Hospice workers accompany dying people

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Lisa Sartin

By Jerrilyn Zavada

As a nurse, Lisa Sartin has been interested in end-of-life care.

Sartin began her nursing career 25 years ago and has worked in oncology, critical care and as a nursing supervisor.

But in the last year, working as a hospice nurse for OSF Home Health in Ottawa, she found her niche.

“When I was working with oncology patients, I was just out of nursing school and loved it, but it was a little stressful,” Sartin said. “I was 22 years old and thought I could fix everything. Hospice was something I was just always interested in. This opportunity was available and I tried it and loved it.”

Sartin and the rest of the hospice care team, which includes skilled nursing, a social worker, certified nursing assistants and the chaplain/bereavement coordinator, work closely with one another to provide mental, physical and spiritual support for dying people and their families.

“From the minute they are admitted, each patient is always treated individually,” Sartin said. “Each patient has individual needs, each family has individual needs. We assess where they’re at in the grieving process, acceptance process and develop a plan of care from there.”

Sartin said the frequency with which the team visits the patient and family depends on the illness. A key responsibility of the nursing staff is education, especially on pain management and medicine administration.

“We see them a couple times a week,” she said. “If they are more critical, we see them more often. We go out and we’re there for the whole family. We’re caring not just for patients but for the whole family. You develop very close friendships and relationships with them.”

At a time when emotions can be all over the map for everyone involved, Sartin takes special care to be honest with the patient and their family about what they can expect.

“I tell them I will always be honest with them and that I can’t promise them any time, but what time there is I will make comfortable for them,” she said. “Everyone is different. Not everyone can handle the same conversations at the same time. By the time of the transition, families and patients are very educated and ready. Some patients want to be educated right up front and others want to be educated as they’re going through the process. All are educated the same, just at different rates.”

When death is imminent, Sartin says most people are prepared, but she’s not sure anyone is ever ready.

“Every family is different,” she said. “They’re prepared to see the family member not suffer anymore. I’ve been present for many passings. As a nurse our job is to be a support system. There are many times when we get in the car and we cry, but our priority is to be a support and be with them at the time of death.”

Although hospice care isn’t for everyone, those who do work with dying people and their families find a great personal reward from the task. Sartin says hospice workers have to be caring and compassionate, not only for people, but also for the line of work they are doing.

“Hospice is very rewarding. In nursing you want to fix everybody,” she said. “Sometimes helping means not fixing. It is rewarding knowing you have helped a patient and family through what is the most difficult time in their life. You’ve given comfort and know you’ve made the passing as peaceful as it can be. I’m rewarded every day by the friendships I make with the families and the patients.”

Each member of the hospice team brings a great deal of professional work ethic. Still, the nature of the job is they are losing someone with whom they have formed a relationship.

“You become very close to them,” Sartin said. “With each patient you lose, you are losing a friend. That part is difficult. But the benefits and rewards you get in the job very much outweigh that part of it.”

Throughout the process, Bill Clark, bereavement coordinator, is present for the dying patient and the family to help with the grieving process.

“I visit the patient or family as often as they request me,” Clark said. “Providing active listening is primary. By listening, I am able to discern their needs and concerns about dying. The bereavement coordinator’s presence, spiritual support and prayers are what they most request.”

After the patient’s death, the bereavement coordinator continues care for the family for 12 to 13 months in various ways. Once a year, a memorial event takes place for families who have lost a loved one in the previous year.

Clark, also an ordained minister, provides a calm, pastoral presence “by representing the love of God and the hope of heaven and eternal life He has promised through His Son Jesus.” He also offers prayers, which he says hardly anyone declines.

“One of my important assignments is to ascertain their religious background and even offer to contact their own pastor, priest, rabbi or any other religious clergy,” Clark said. “I never attempt to replace someone’s church or clergy, but simply come alongside for additional spiritual support.”

During his years as a hospice chaplain, Clark, says he is surprised at how most people are able to work through a lot of their own issues within themselves.

“Their own faith background helps them,” he said. “They often need a sounding board for their thoughts and feelings, which the chaplain can provide. I have discovered that people with faith have more peace in the midst of the dying process than those who do not … Many questions are resolved in a surrendered life and future to God through prayer.”

Complete Article HERE!

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09/28/17

Don’t Neglect the Softer Side of Your Estate Plan

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Document and share your wishes for end-of-life care, the care of your pets, the disposition of your tangible assets, and more.

By Christine Benz

As my family’s “first responder” and resident financial person, I served as power of attorney for my parents, as well as executor and trustee for both.

Their estate-planning documents attended to a lot of crucial issues: the distribution of their assets, the trusts that were to be set up upon each of their deaths, and their attitudes toward life-sustaining care.

Yet having gone through the process of seeing my parents through their last years and settling their estates, I’m struck by the number of “softer” decisions these documents didn’t cover–important topics like their attitudes toward receiving care in their home or in a facility, or whether they’d prefer to die at home or if a hospital was OK. Did I need to split up all of the physical assets equally among the children, or were they OK with me letting more stuff go to family members with a greater need for them?

Implicit in making someone an executor, trustee, or guardian, or delegating powers of attorney, is a statement that that you trust that person’s judgment to do what is best in various situations, including some of those outlined above. But I think it’s worthwhile to think through some of the softer, nonfinancial issues that could arise in your later years. Some of these issues, such as providing for the care of pets or getting specific about the disposition of your physical property, can be addressed with legally binding estate-planning documents. Other issues, such as how you’d like your loved ones to balance your care with their own quality of life, are best discussed with your loved ones and/or documented in writing on your own. (If you decide to leave physical or electronic documents that spell out your wishes on some of these matters, be sure to let your loved ones know how gain access to them.)

Attitudes Toward Guardianship
If you have minor children and have designated guardians to care for them if something should happen to you, you of course need to inform the guardians and make sure they’re OK with the responsibility. In addition, take the next step and communicate to your designated guardians about your priorities and values as a parent–your attitudes toward their education, spirituality, and financial matters, for example. And even if your children are grown–or getting there–it’s worthwhile to talk to close friends or family members about how you hope they’ll interact with your kids if you’re no longer around. After my sister lost a dear friend to cancer, for example, she and a group of other close friends serve as surrogate “moms” to their late friend’s daughter, now in her mid-20s. There’s no substitute for an actual mom, of course but it’s a relationship they all cherish, and they’re happy they discussed it with their friend before she passed away.

Attitudes Toward Life During Dementia
Given the increased incidence of dementia in the developed world, an outgrowth of longer life expectancies, it’s worth thinking through and communicating to your loved ones your attitudes toward your care and quality of life if you develop dementia. Would you prioritize in-home care above all else, or would care delivered in a facility be agreeable if it improved your spouse’s quality of life? Would you want your spouse or other loved ones to try to care for you themselves for as long as possible, or would you rather they delegated those responsibilities to paid caregivers, assuming the family finances could support it? How would you like your loved ones to balance your quality of life with their own? How would you like them to balance your health and safety with your own quality of life? How important would it be to you to receive daily visits from your spouse and other loved ones, even it meant that those obligations would detract from their ability to travel or pursue other activities? Would you prefer to keep your decline as private as possible, or would you rather be out in public interacting with people no matter what? There’s no “right” answer to any of these questions, but talking through them can help your loved ones be at peace with the decisions they could eventually make.

Attitudes Toward End-of-Life Care
I first became aware of The Conversation Project, designed by to help people discuss their own thoughts on end-of-life care, on NPR. In the segment, two adult daughters used “The Conversation” template to interview their elderly dad about the decisions they might eventually make on his behalf. Their father had drafted an advance directive that specified, rather strictly, that he didn’t want any life-sustaining care if he had no chance for a good quality of life. But one of the daughters asked whether it would be OK if they took a bit more time with the decision to let him go if it provided them with a sense of peace. Without skipping a beat, the dad said, “Oh, of course. Absolutely.” That conversation drove home the importance of adding nuance to the end-of-life discussion, above and beyond what could be provided by living wills or advance directives. You can read more about The Conversation Project and download a conversation starter kit here, but don’t feel bound by it. If there are important end-of-life issues that it doesn’t address, feel free to expand the discussion with your loved ones and/or commit them to writing.

Attitudes Toward Funerals, Burials, Etc.
Many people make plans for any funerals/memorials and the disposition of their bodies well in advance; the right approach to these issues may be predetermined by culture or religion. But for other people, attitudes toward these matters aren’t obvious at all, so it’s useful to spell out your wishes in advance, either verbally, in writing, or both. (My mother initially insisted that my dad would be buried rather than cremated, but even she was convinced that cremation was the right thing after we found three written statements from him about his desire to be cremated.) Maybe your wishes are simply to have your loved ones say goodbye in whatever way gives them the most peace at that time; in that case, tell them that or write that down.

Attitudes Toward Care of Pets
It’s a cliche to say that pets are like family members, but for many people, that’s absolutely the case. The good news is that you can actually lay the groundwork for continuing care for your pet as part of your estate plan. The gold standard, albeit one that entails costs to set up, is a pet trust; through such a trust, you detail which pets are covered, who you’d like to care for them and how, and leave an amount of money to cover the pet’s ongoing care. Alternatively, you can use a will to specify a caretaker for your pet and leave additional assets to that person to care for the pet; the downside of this arrangement is that the person who inherits those assets isn’t legally bound to use the money for the pet’s care. At a minimum, develop at least a verbally communicated plan for caretaking for your pet if you’re unable to do so–either on a short- or long-term basis. This fact sheet provides helpful tips to ensure for your pets’ continuous well-being.

Attitudes about Disposition of Personal Possessions
Are there specific physical assets you’d like to earmark for children, grandchildren, nieces, nephews, or friends? If so, your estate-planning attorney can help you codify the disposition of those assets in your will so there’s no confusion. Also let your loved ones know if there are physical assets that you’d like to stay within the family (again, your will is the best way to do this). Importantly, you should also let them know what you don’t feel strongly about them selling or otherwise disposing of when you’re gone. Do you want your executor to take pains to divide the assets equally among your heirs so that everyone receives tangible property of similar value? The topic of dividing up tangible property among family members is a complicated one, to put it mildly; the more you say about your wishes in advance, the better off everyone will be in the end.

Complete Article HERE!

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