Author Archives: Cindy Moyer

AAA of Bereavement

Three Emotional Phases & Six “R”s of Grief and Mourning

Therese Rando and colleagues created a theory that suggests we move through processes in our mourning (bereavement). When we “process” emotions, there can be a natural flow to recognizing what we feel, understanding what our feelings mean, and then incorporating those feelings into our daily functioning in (hopefully) healthy ways. Rando (et al.) suggested there are three emotional phases and six processes within those phases. Caring Choices embellishes Rando’s processes below with our “AAA” concept which takes a softer approach to the emotional phases. Our use of the word “death” can be expanded to consider any “loss” that did not result in death (i.e., divorce, military deployment, etc.) that may cause feelings of mourning.

Avoidance Phase

1) Recognize the loss: this means acknowledging the death and understanding the death. With some deaths, we may never fully understand the cause (i.e. suicide, undiagnosed medical condition). Although we may not have all the answers about the nature of the death, we can still recognize and acknowledge our feelings of loss related to the death. Acknowledging does not yet mean that we emotionally accept the death.

Confrontation Phase

2) React to the separation: this process involves experiencing emotions and expressing reactions to the death. In this process, we recognize and incorporate secondary losses (learning minor home repairs, cooking for myself, managing finances, losing friendships that were connected to being a couple, etc.).

3) Recollect and re-experience the deceased and the relationship: this requires reviewing and remembering the deceased, as well as reminiscing and perhaps re-experiencing feelings. Recollections may be positive or negative depending on the nature of the relationship. It is important that we accept the relationship and experiences as they were, without judgment, and perhaps with forgiveness of the deceased and/or ourselves.

4) Relinquish old attachments to the deceased and the old “assumptive world.” Assumptive world is our core beliefs that orient and ground us in life. When someone we love dies, this foundation may be shattered. It may be necessary for us to re-examine our core beliefs and determine how our core beliefs will be restructured in our now different life.

Accommodation Phase

5) Readjust to move forward in your new life: this means developing a new relationship to the person who died, adopting new ways of being in the world in your new role(s), and establishing a new identity. This does not mean forgetting.

6) Reinvest. This means putting emotional energy into new people, experiences, hobbies, goals, etc. We absorb the death into our lives and incorporate the loss and its meaning as we attempt to move forward in forming new relationships and revitalizing ourselves. It means learning to appreciate the “new” with gratitude for the past. It also means re-investing in yourself, in your needs, and in your self-care.

An Illustration is Word a Thousand Words (Hopefully)

Brush with Mortality

At the end of every year, we see lists of “people we’ve lost” during the year. These lists are usually comprised of Hollywood celebrities, athletes, music artists, literary giants, etc. Generally, these are people we don’t know on any personal level other than being an admirer of their creativity, their acting, their prowess on whatever sports field, or their words on printed page. The product of their lives has touched ours in numerous ways, but their lives never truly intersected with our own.

We look over these lists with wonder and amazement of how our childhood idols, teenaged crushes, or influential beings are leaving us and we notice that it feels alarming to us. How could they be gone “so soon?” We feel a sense of loss and tragedy; perhaps not so much for them but for the memories their work helped to create for us. We recognize a glimmer of our own mortality when our icons die.

In 2017, I felt sadness for the deaths of icons and idols from my life whose work left an impression on me: Mary Tyler Moore, Adam West, Mike Connors, Richard Hatch, Erin Moran, Tom Petty, Malcolm Young, David Cassidy, Jim Nabors, Monty Hall (who didn’t love Let’s Make a Deal?!), Spencer Johnson (have you read Who Moved My Cheese?), Don Rickles (you hockey puck!), J. Geils, Joni Sledge, Dallas Green (Go Phils!), and Bill Paxton to name just a few. I didn’t know these people personally, of course. My connection to them is in my memories of watching their TV shows with my brother and our parents, or seeing them play (or manage) a game in Philadelphia, or reading his book with a great group of colleagues at Susquehanna University. Jim Nabors was one of my mom’s favorite singers. David Cassidy and Richard Hatch were among my early teen crushes. My friends and I cruised local streets to the music of AC/DC and Tom Petty (among others, of course). Oh, the sweet memories!

While the deaths of celebrities and athletes may impact us, our bereavement is fleeting. We muse over their influences on our lives, we might say a prayer, or recognize their deaths in some quiet way. But we go on relatively easily with the normalcy of our lives. We feel the brush of mortality more keenly when someone dies whom we know personally.

On December 23rd, I learned that a man who had touched my life personally had died suddenly and unexpectedly the day before. Although we hadn’t seen or spoken to each other in decades, I felt an enormous sense of loss and mourning for Jack’s son and daughter, his mother, his sister and brother and their relatives and friends who had the pleasure of spending their lives with him. I also felt mourning for myself that caught me a bit off guard – because our relationship was so long ago and we’d had no contact over the years.

When we have loved someone, I believe we carry a portion of that love with us. Sometimes, it is deep in our hearts especially when the relationship ended long before a life ended. It’s that deep, tucked away portion that is unexpectedly awoken when someone we loved dies. It certainly awakens a sense of mortality and brings it to the forefront of our thoughts. This awakening of mortality occurs when death separates us from long-ago loves or our parents, siblings, friends, and, in my case, hospice patients.

Today, I can be grateful for the love and experiences that my long-ago relationship taught me – thankful for the threads that added to the tapestry of who I am.

I hope that Jack, and each who died in 2017, now rests in Peace. I hope that the people who loved them may find comfort in loving memories. I hope that brushes with mortality enable us to live more fully and love more deeply until we are the ones resting in Peace.

Your Wishes are Important, But They’re NOT the Only Consideration

In my role as a hospice social worker, I have encountered patients who have an able and involved network of family and friends in caregiving roles. They are the fortunate few. More often than not, the situation is an elderly married couple whose children live in other states and who have a dwindling network of friends who are able to assist. Or, the patient is a middle-aged person who is riddled with cancer or an advanced illness needing 24/7 care and the only person available is their 20-something child or their spouse. No one person can provide 24/7 caregiving for very long. There’s no shame in admitting that help is needed; there’s no shame in accepting when help is offered.

Much of the focus on end-of-life healthcare planning is centered on the patient’s choices. Caring Choices advocates strongly for patients to consider their options and discuss healthcare choices with their healthcare team and people they love. We also, however, advocate for meaningful conversations that encompass not only the healthcare choices but also the caregiving needs, the availability of options, and how those options will be financed.

Depending on which article you ready, 75-90% of Americans wish to die in their own home. Dying in your home, for those who want that, can be a peaceful, comfortable end if there are adequate planning conversations long before the chronic illness progresses or the terminal diagnosis is pronounced.

In order to remain at home through the end of life, you will need help. This is a fact that you need to wrap your brain around before you read further. YOU WILL NEED HELP whether you are the patient or the caregiver.

My first recommendation is to look within your family/friend circles to find private duty caregivers. Typically, these are people you already know and trust. Some will supplement caregiving out of the goodness of their own heart; others may ask for (or you may offer) minimal remuneration ($10-18/hour). This is also the network who will most often provide meals, run errands, visit and provide some relief of the caregiving role. They key is to ASK them for the help you need; people don’t know until they’re asked.

A second option is hiring caregivers privately through homecare agencies. These caregivers help provide care for yourself or your loved one at home in addition to enlisting hospice services. Many agencies provide in depth training on how to provide care from bathing/dressing to bedsore prevention and caring for people with dementia. Some agencies, however, do not provide much training. You want to be certain you are asking agencies about the training they give their staff. In our local area, these agencies typically charge between $22-25/hour depending on the level of care needed. That adds up to a lot of money pretty quickly.

A third option is to qualify for Medicaid (Medical Assistance, MA) Waiver services but be prepared for this process [from application to approval] to take about 90 days. Unfortunately, many people who elect hospice do not have 90 days to wait for caregiving help (but that’s for another blog). In order to qualify for MA, you (the patient) must: (1) meet income and asset guidelines; (2) submit an application which can often include a myriad of paperwork including 6 months of bank statements, life insurance and investment valuations, and proof of income to mention a few of the requirements; and (3) have time to await the approval process. Once qualified for MA Waiver, your options for caregivers expands to usually cover whatever hours you need (up to and including 24/7) and whatever services you need (personal care, light housekeeping, errands, companionship, etc.)

So, those last three paragraphs talk about the “who.” Your next consideration is “who will do what.” The language you use in these discussions needs to be very clear and not open to interpretation. [Remember the Abbott & Costello “Who’s On First” routine. Language is important.] As the dying process progresses, patients typically become less able to do things on their own: walking independently progresses to using a walker/wheelchair to being bedbound or unable to move on their own. This typical progression often results in needing assistance with other Activities of Daily Living (ADLs) like bathing, dressing, and toileting. This is where the really important caregiving questions begin. Who among your family and friends will be able (willing, comfortable) to help you bathe? Who will be able (willing, comfortable) to wipe and clean you after toileting? Who will have the physical strength to help you get up out of a recliner and into the bed, or to turn and reposition you in the bed? Who will be able (willing, comfortable) giving you specifically measured doses of comfort medications as your end draws near? (There are many other caregiving questions to consider but if you can answer these four most challenging queries, the other caregiving roles will likely “fall into place.”)

These are important conversations to have now with your family and friends. That way, when the time comes that you or a loved one decides to stay at home through end of life, you’ll already have the structure in place. Everyone always says “I don’t want to burden my family.” Having these conversations and getting a plan is place is exactly how you alleviate much of that “burden.”

Embrace the elephant in the room. Start talking about healthcare choices, but also talk about who can provide caregiving assistance and when they are available to provide it.

Animal Intuition

My husband, Jim, and I have been on the receiving end of caring kneading from some of our cats over the years. Mercie (rest her soul) used to knead the back of my neck in bed at night which was especially welcome when I had a headache. The methodical push of her soft-padded paws accompanied by her melodic, low purring was better medicine than the ibuprofen I’d taken before going to bed. Just the other night when Jim wasn’t feeling well, Sundae seemed to sense this and kneaded his stomach in all directions with positive effect. We know others who have similar stories about the comfort and care they receive from their furry friends. It’s not difficult to find a story online about a cat in a nursing home who lays on the bed of a resident as they take their final breaths; or a dog that can sniff out cancer. Animals are so well connected to the metaphysical; they just seem to “know” when it’s time to provide comfort or time to let go.

A few weeks ago, we chose to end the suffering of our oldest cat, Soxie, whose final seizure was so intense and vivid, she seemed possessed. It was horrifying to watch and hear; it will be a very long time before I can close my eyes and not see what she experienced. When she was able, she retreated to an odd location where she’d typically go when she wasn’t feeling well. She knew it was her time and she was “going inward” to prepare herself … and us.

Animals just seem to “know.”

We humans are animals too; some would say more evolved than cats and dogs. Perhaps we’re more evolved in matters of business, literacy, art, and intelligence, but I’m not certain we are more emotional or more compassionate.

Some of us have such difficulty listening to our intuition when someone we love is sick or dying. We tend to pursue all possible healthcare options until there are no more medical interventions to impede the natural progression of disease or age. We focus on the next treatment option, the next surgical procedure, or the next drug; sometimes at the exclusion of the emotional and metaphysical components of the one who suffers. This focus is sometimes so intense that we forget to look at the person right in front of us (or in the mirror) and ask “what do you need at this moment” or “how can I care for you today.”

Some people spend so much energy waiting for the other shoe to drop, we forget that there’s already one foot immersed in the disease and daily symptoms, or contemplating their final hours.

We need to pay more attention to our “animal” intuition. We need to listen to those we love who are living with a chronic illness or a terminal disease. We know our bodies and our minds better than anyone else in our life – family, friends, healthcare professionals, clergy. Be mindful of the one who suffers and seek to understand what they need. We need to recognize when it’s time to stop doing and just be still. Then, provide care and compassion like we just seem to “know.”

Just Be

Most people shy away from being around dying people. That seems to be a normal reaction. But, being around death – experiencing death of loved ones at home – used to be a very natural occurrence in American households.

Before we “medicalized” dying and death, people were cared for at home by family and friends. There was an inherent knowledge about caring for aging, ailing, and/or elderly family members as they reached their final months, days, and hours. More than 80% of Americans say they want to die at home yet fewer than 25% of us actually do that. This disparity is likely because we’re rushed to the hospital by ambulance after panicked 911 calls, or we’re involved in a traumatic accident and traverse the ER-to-ICU pathway, or because palliative and hospice care are discussed/started much too late in a disease’s process.

Caring for a dying loved one at home is challenging and, as I’ve shared in this blog previously, very rewarding. Beyond the demands of providing actual care (bathing, dressing, feeding, toileting, medication management, etc.), there is also the emotional experience of caring for and watching someone you love fade away. It’s this emotional state that I want to address.

I was once witness to a family caregiver’s phone call from a friend. I could see the happy anticipation in her face as the caller expressed desire to come by for a visit. The caregiver’s demeanor and spirit lifted as if a burden was removed from her shoulders knowing that she would have an hour or two with a friend to sit and enjoy a cup of tea and feel not so alone.

As quickly as her smile appeared, though, it faded away as she shared with her friend that her loved one was not responding to conversation anymore. Her joy and soul were crushed, and her heart was broken. It was painfully obvious that her friend decided not to come by … and equally obvious that she felt abandoned.

It’s not always easy to know what to say to our friends who are caring for their dying loved ones. It’s easier (for us) to avoid the situation by offering excuses like “I don’t want to remember her this way” or “I can’t watch him like this.” Family caregivers do not have the luxury of avoidance.

I believe this avoidance is typically caused by fear. Fear of not knowing what to say. Fear in not knowing what to do. Fear in recognizing our own mortality in the face of our friend’s dying loved one. Fear in upsetting our friend with the “wrong” words or by reminiscing occasions spent with their loved one.

We don’t need to know the “right” words. Sometimes we don’t need to say anything at all. It’s so important to just be there for our friends as they provide care for a beloved family member. Sometimes they just need their hand held or a strong, supportive hug. Sometimes they just need our presence to share a cup of tea or a simple meal, or to bring them a bag of groceries, or pick up something at the drug store.

We don’t need to be armed with clever sayings or big gestures. We need to just be able to sit with them, let them share their experiences, and listen. We need to … just be.

Intrusive Assumptions

Facebook is famous for quizzes to find out silly and random “facts” about ourselves. Quizzes determine which Bible character we are like, what our favorite song reveals about our personality, or even the color of our soul. Recently, I saw a quiz that would determine which friends will take care of me in 2016. With a quick scan of my Facebook presence, the quiz returned a list of five friends who will “step up”. If only it were that easy to determine who can step into the role of caregiver. My husband was not among the five friends which is curious since he would be the first person in line to take care of me in 2016 no matter what life throws at us.

This quiz got me thinking about the randomness with which many people approach the need for personal caregiving when age or health undermines our ability to care for ourselves. In my work, I see people of varying ages in many different stages of chronic illness. In my family and community, I see the same. When I meet with families who are trying to determine their next step after age or health has altered their loved one’s course, I often hear that the first choice is remaining in their home. It then becomes my job to “intrude” on their personal lives to help them decide if that really is the right/best course of action for them.

Since beginning Caring Choices, I’ve heard the word “intrude” from a handful of people, as in:

“I wouldn’t want to intrude on their personal decision.”
“I wouldn’t want to intrude on a family matter.”
“Asking questions about [their situation] would be intrusive, wouldn’t it?”

To a degree, I can understand the hesitation to “intrude.” Typically intrusion is from the perspective of outside, looking in – someone outside of the situation, being afraid to ask questions or offer assistance/guidance/suggestions.

But what happens when the intrusion is generated from the inside outward – much like the Facebook quiz that chose my 2016 caregivers for me – without asking important questions like “who will do what.”

We should not assume that our Facebook quiz caregivers (or other family/friends) will be able or willing to handle the demands of caregiving. Yet, many people make this very assumption. The act of caregiving is a huge commitment. Caregiving runs the gamut from picking up prescriptions or groceries to preparing three meals a day to providing a bath to administering medications via a PICC line to very personal hygiene after elimination. Not everyone is comfortable with every aspect of caregiving. To assume that others will “step up” can be an intrusion. Certainly friends and family do step up when they are needed. I’ve seen this. I’ve done this. But there are also times when friends and family are not able to manage caregiving amid their own life’s demands – job, raising children, their own illness.

The best way to avoid the randomness of caregivers is to have conversations with people you care about. Talk about who can pick up the groceries and how often. Determine who is available to cook/provide meals and when. Pull together a schedule so you all know whose turn it is. Find out who is comfortable and able to give you a bath or change your soiled sheets or, literally, wipe your behind. Seriously, these skills and abilities are not present in everyone’s toolbox. The less prepared we are for the caregiving role – as either provider or recipient – the more awkward and intrusive the caregiving becomes. Put a time table to the chores of caregiving. How long will you need someone to do “X”? What happens when they are no longer available? Who will you turn to when family and friends have burned out?

Caring Choices knows that staying in our homes is the optimal choice for most people. If you want to stay in your home, make a plan now that makes that option feasible. Don’t simply rely on the random availability of family and friends. Family and friends may not be able to meet all of your needs 24/7. They may not be comfortable providing certain kinds of care. Begin conversations now so that the roles of caregiving are carefully considered. Know before a need arises who can help you and in what ways. Planning now can alleviate the intrusive worry of needing or providing care.

Que Sera, Sera

Recently during a meeting about nursing home safety measures to reduce fall risk and prevent future injuries, a resident said “whatever will be, will be” (which reminded me of the old Doris Day tune, titling today’s blog post). His opinion about said safety measures was that regardless what we plan to do, we won’t prevent all falls and he may be injured in a fall at some point.

To a degree, I live my life under the motto of “whatever will be, will be” because we don’t know what the future holds and we are not able to control every aspect of every situation we encounter. However, I also recognize that we do have control in how we react to things that occur. We do have the ability to affect change in our circumstances when life throws us a curve ball. We do have the power to make plans (Plan A, B and C) to prepare for future happenings.

One thing we all know for certain is that each of us will face death, our own and that of people we love. We don’t know when or even how it will happen. We likely won’t be able to control or predict when it will happen. BUT, we can help manage the emotional burdens for those we love.

We can impact the future for ourselves and people we love by making plans about healthcare choices and having personal conversations with them about our hopes, values and expectations. Plans do not need to be elaborate constructs of detailed, step-by-step processes. Simply telling our loved ones a few key things can help them face our illness and death with less trepidation and burden. For example, some things I say to people who love me:

It will be okay to place me a nursing home if you are not able to take care of my needs in my home. Visit me as often as you can but know that daily visits are not necessary. If I’m still able to see/read, make sure I have my iPad, books and magazines to occupy my time.
I do not want to take a handful of medications especially if they will no longer benefit me or give my life quality. You know that I cannot swallow pills without great trouble so limit what I’m given in pill/capsule/caplet form, make sure it’s crushed (or an appropriate alternative if manufacturers say not to crush!) and in pudding!
I am in favor of receiving hospice care for as long as I am eligible. Don’t wait too long to begin this vital service which will benefit me and you.
Know that I have made my choices and decisions based on my values, beliefs and life experiences. I have made these choices and decisions to reduce/eliminate decision-making burden on you. My Five Wishes form will guide you in future decisions if I am unable to communicate.
If I’m no longer able to express myself, know that I love you. Your presence in my life has made it much richer and more meaningful. I will see you again someday. It is okay to say good-bye to me and for you to tell me it’s okay to leave you.

This isn’t morbid or maudlin. This is life-changing knowledge I give to my loved ones so they can know they’ve done things in the manner in which I’ve instructed (and chosen for myself). They will not need to second-guess decisions or question what I would have wanted when a healthcare professional questions them. They will be able to confidently advocate for my choices and stand up to people in positions of power who may disregard my choices because they deem it more appropriate to follow regulations and rules under which they provide services.

Taking some of the unknown out of “whatever will be, will be” for my family and friends is important to me. Planning for their emotionally-whole passage through loss, grief and bereavement is something I do as much for them as for myself. Conversations, writings and my Five Wishes will aid them in decision-making; but they will also aid them after I’ve gone to the other side of the garden wall (nod to Jackson Browne).

Caring Choices. Make them for yourself and for those you love. We can’t account for everything, but we can pave the way to reduce emotional burden of decision-making and caregiving. Don’t leave your and your loved futures up to “Que Sera, Sera.”