Let’s Talk Tough Conversations

Caregiving is filled with difficult discussions and End-of-Life talks are particularly hard, uncomfortable, and can even feel insensitive, at times. The key, though, lies in reframing these conversations as acts of love that satisfy a dual need for both you and the person you’re caring for. Not only does your parent/grandparent/spouse/partner have the right to be heard and respected for their choices, but this kind of validation can also bring them comfort and piece of mind. This is the very same thing it can do for you as it removes the burden of trying to guess what their wishes are in a time of crisis.

A good place to begin is with talking to your adult family member about the kind of medical care they want and don’t want as they grow older, become ill, or if a catastrophic health event were to occur. Some questions might focus on their priorities such as wanting comfort care over aggressive treatments; preferring hospice care at home, if possible, over spending final days in a hospital; or embracing quality of life over quantity.

These conversations are deeply rooted in a person’s values, beliefs and what is most important to them, and even if your family member is in the early stages of a dementia diagnosis, he or she may still have a strong desire to make their preferences known.

Talking about it isn’t enough, though. Their wishes must be outlined in a legal document called a Living Will, also known as an Advance Directive. The Advanced Directive spells out instructions regarding preferred medical care if a person is unable to communicate this information on their own.

There’s another necessary legal document that names a Healthcare Surrogate, aka Healthcare Proxy, or Healthcare Power of Attorney. This person becomes the voice of the patient if they’re unable to speak, so this needs to be someone who the patient trusts to do their best in terms of ensuring that medical personnel carry out their wishes. It’s a hugely important role, and one that not just anyone can fulfill. In fact, when I was going down the list of potential prospects for me personally, I ended up choosing my ex-husband, who I will say, was very enthusiastic – almost too much so!

Finally, another critical health-related document to discuss early on is the Do Not Resuscitate form, or DNR, a formal doctor’s order that must be completed and signed by a physician and your family member. Essentially, it states that CPR should not be performed if they stop breathing or their heart stops beating.

The reason this form is so critical has to do with the effectiveness of CPR procedures, which include mouth-to-mouth resuscitation, but also electric shock, inserting a tube into a patient’s airway, and even open-chest heart massage. If someone is already in a fragile state, CPR may leave him or her in profoundly worse condition than before. It’s a very personal choice but one that needs to be made ahead of time. For the record, during the time I helped care for my mom, I carried this document with me in my Caregiver Purse, and always made a point of letting hospital personnel know about it. Sometimes, I felt like the Angel of Doom, but making sure my mother’s wishes were honored was always what guided me.

So what should happen next? Make copies like crazy and share t with all healthcare personnel involved in your family member’s care. Keep a set in the person’s home. If they live in a residential care community, make sure the administration has the documents, and always keep copies that you can put your hands on quickly. Also, give to the hospital and/or ER whenever your loved one is admitted. Don’t assume that if you gave it to them once, it will be enough. With the DNR in particular, make sure it’s in a place that can be clearly seen in your family member’s home or room.

Two good websites for more guidance on Living Wills include: AgingWithDignity.org, which offers a form called 5 Wishes, a type of Living Will that addresses emotional, spiritual, and personal needs in addition to the medical side of things. The other site is TheConversationProject.org, which actually offers conversation-starter kits to help individuals and families feel more comfortable when talking about end-of-life choices.

There is nothing easy about having these kinds of talks, which can often be very emotional experiences. And it’s ok to say that it makes you uncomfortable, and you’re unsure how to begin. But, as a family caregiver, having the courage to take the lead on this can actually offer an opportunity to create an even deeper relationship with the person you’re caring for. Who wouldn’t want that?

Note: Another important conversation has to do with seeking a loved one’s input regarding  their funeral or memorial service. Again, it may seem like a subject you shouldn’t bring up, but in reality it’s a way of showing your respect by wanting to honor their final wishes. For more info, see this post (a reader favorite) about planning my mom’s funeral with Barbra Streisand’s help.

 

The Cone of Uncertainty-What I Know About Grief

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When I first moved to Florida many years ago, the expression “Cone of Uncertainty” caught my attention. During hurricane season, it refers to the cone-shaped path that a storm might potentially follow at any given time. In other words, the weather forecasters can’t really pinpoint when or where it might land.

Turns out, that’s also a way to describe how we grieve.

Those familiar with Elizabeth Kubler-Ross know that she divides the process of grief into five stages – denial, anger, bargaining, depression and finally acceptance. To that neat package, I say, “If only it were so simple.” Imagine being able to identify that you’re angry with only two more stages to go, or feeling depressed, but relieved that acceptance is just around the corner. Unfortunately, it’s not that linear. Grief will pinch your heart months or years later walking into the hardware store and smelling pipe tobacco, or driving in the car listening to the radio and hearing a parent’s favorite tune. It is not always loud or obvious, and surprisingly not a constant.

Sometimes deep sadness is coupled with a mix of other emotions. If a parent was suffering you feel at peace knowing their pain is gone. You may be relieved that the stress and challenges of caregiving are at an end, yet at the same time feel unmoored because the concentration and energy you devoted to this job are no longer required. For caregivers in particular, grief can sometimes seem insurmountable for this very reason.

In times of great loss, regret can often keep us stuck. The death of a parent is the death of hope. You may have longed for a different relationship with them. One in which you said or heard, “I love you,” or “thank you,” more often. Our parents also tend to be the keepers of family history and with their deaths we lose our connection to the past.

Guilt is another difficult emotion to overcome. You wonder if you did enough or should have done things differently. Harsh words were spoken and apologies are too late. Now is the time to remember you’re only human. Being the perfect child is just as unrealistic as being the perfect caregiver. Stop judging yourself. Instead create something positive out the negative. Maybe your father liked his cats more than his kids. Make a donation to The Humane Society to honor his memory. Maybe you wished your mother had spent more time with you as a child. Look into becoming a Big Brother or Big Sister or volunteer as a reader to kids at the local elementary school. I’m not suggesting you leap into anything immediately, but there are ways of softening the guilt and regret that attach themselves to the death of a parent.

Keep in mind that the experience of losing a mother or father will be different for every sibling. It depends on your relationship with that parent; what words remained unspoken; and how you viewed your contribution to their well-being, not just at the end, but throughout their lives.

Anniversaries of a death or certain holidays can be tough. A year after my Dad died, I raised a glass of wine, played Puccini’s Madame Butterfly (our favorite opera) and said, “Daddeo, wherever you are, I hope it’s interesting.” He was fond of telling me that heaven seemed like a very boring place. On Mother’s Day, I do all the things my mother loved to do – thrift shopping, listening to Barbara Streisand CD’s in the car, eating lunch at Too Jay’s, then I come home and tell her ashes all about it.

If you don’t want to be alone, plan ahead to get together with people who will be emotionally available for you. Just like everyone grieves differently, your friends, family and co-workers will support you in different ways. Not everyone can be a good listener when you need to talk through the grief. Some people are better with concrete tasks like bringing over dinner or taking care of a chore you’ve been putting off.

Midway through the experience of attending to both my parents, what concerned me was something that often occurs with caregivers. Our identities merge with the task of caring both physically and emotionally for an aging parent and at some point the question arises – “Who will we be when the caregiving ends?”  You might discover this type of service is something you’re really good at and you want to do more. For someone else, the idea of being responsible for another living creature, even if it’s just a pet, is way too much. The point is to be gentle with yourself, no matter what you feel.

Keep in mind, there’s no set timetable for grieving and no right way to do it. Give yourself permission to experience moments of joy amidst the mourning. It does occur. Don’t try to be all things to all people. If that means a moratorium on helping others deal with the loss, so be it. If you need help, ask for it – from clergy, from friends, a support group or a grief counselor.

Grief, which is so often muddied with guilt, regret and anger, can be exhausting. Doing what we can to make things right with our parents before it’s too late, opens us to the possibility of experiencing what Mary Pipher, psychologist and author, refers to as “good, clean sorrow.” It’s certainly something to hope for.

Excerpt from The Dutiful Daughter’s Guide to Caregiving

Photo by Carlos Koblischek

Should Your Parent Have a DNR?

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During the six years I cared for my mom, her trips to the Emergency Room became more frequent. Depending on the issue, the first thing out of my mouth on arrival would sometimes be, “She has a DNR on file, and I have a copy in my purse.” Sometimes, people would look at me strangely or with judgment, because they didn’t understand what was behind those words – that I loved my mother deeply, and she trusted me to make her written instructions known, regardless of how much it hurt.

How fortunate I was that both my mother and father were open to discussing and completing legal papers outlining all their end-of-life decisions, not only a DNR. Particularly during a medical crisis, it removed the burden from my shoulders of having to guess what they wanted.

Until my parents’ health began to decline, my knowledge about this document was limited. It’s clearly a very personal choice – one that should be made with an understanding of the procedures involved and their limitations. Below are answers to common questions that will hopefully aid in making an informed decision.

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What is a DNR? DNR stands for Do Not Resuscitate. It states that medical personnel should not perform cardiopulmonary resuscitation (CPR) if a person stops breathing or if their heart stops beating. If no DNR is in place, then any healthcare facility or personnel is legally required to attempt life saving measures.

Why is a DNR so critical? It has to do with the effectiveness of CPR procedures, which can include mouth-to-mouth resuscitation coupled with strong chest compressions, electric shock, inserting a tube into a patient’s mouth or nose to open up airways, and even open-chest heart massage. If someone is already in a compromised state of health due to age and illness, CPR can cause more harm than good. Statistics range, but all point to the fact that as we grow older and typically, more frail, the effectiveness of CPR diminishes in terms of increasing chances of survival or improving quality of life.

Is a DNR part of a Living Will? Just like a Living Will and Health Care Proxy, a DNR is considered a form of Advance Directive. It is, however, a separate document that only relates to the two specific conditions noted earlier – when a person stops breathing or goes into cardiac arrest. Like all Advanced Directives, it should be completed well ahead of a medical emergency.

Where is a DNR obtained? Considered a physician’s order, it’s important to obtain a DNR Order directly from a physician or hospital in the state your parent resides. A DNR is not valid unless signed by both your parent and the doctor. There should also be ample time given for meaningful discussion by everyone concerned, including whoever holds the position of Healthcare Proxy. If, due to illness or injury, a parent is unable to express their wishes concerning a DNR, in most cases, their Healthcare Proxy is permitted to sign instead.

Also, different states require that the form be printed on a specific color of paper prior to being signed. For example, in Florida, DNR’s must be printed on yellow paper. If not, medical personnel can actually opt to ignore this directive.

Is there only one type of DNR? In some states, a DNR that is completed in a hospital or nursing facility is not valid if a person is discharged to home care. In this case, a home DNR should also be completed and clearly placed where it can be seen by medical personnel entering the residence. Some hospitals may even require that this form be completed every time your parent is admitted. Make sure to ask for clarification.

Can a DNR be revoked? Yes, it can be recalled if your parent chooses to do so, but any facility, physician or other individual who has the DNR on file should be notified, and all existing copies destroyed.

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There’s no question that bringing up the subject of end-of-life choices, in general, is one of the most intimate and important talks we can initiate as family caregivers, and likely the hardest. Yet, the reality is that honoring a parent’s wishes may well be the most profound gift we can give them, and in doing so, find some measure of comfort for ourselves.

Planning Mom’s Funeral with Barbra Streisand’s Help

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In the last year of my mother’s life, she was boomeranging between home and late-night trips to the emergency room every other month. This often meant lengthy hospital stays that left her even weaker than before. Every time it happened, I found myself mentally trying to prepare for the end. Her end. And there were so many things I still wanted to say and ask.

During one of my hospital visits with her, as we’re discussing how much she misses her art classes and how my younger siblings are doing, I decide to broach a topic that has been weighing on my mind lately.

“Mom, I love you, and it’s important to me that you get the send-off you really want, when the time comes. How about if we put our heads together and plan your funeral?”

She claps her hands and says, “Oh, that’s a great idea. What should we talk about first?”

This was one of the many things I loved about my mother — her practical nature; plus, the fact that we shared the same preference in curse words.

She wants to be cremated like my father, but we’ve never discussed where she wants her ashes scattered. Was it in the same place as his — the canal behind the house they’d lived in for 50 years?

“No, no. Don’t dump me in the water. I can’t swim,” she says in all seriousness.

“I want to be scattered over the nearest Stein Mart,” I say with a straight face. “How does that sound?” We were the discount queens, she and I.

Laughing and shaking her head, she says, “I want to be close to you. How about sprinkling me in your backyard in Tampa? Would that freak you out?”

I don’t even hesitate. “Fine with me.” I’m already imagining the perfect spot underneath my papaya tree, strung with wind chimes and bird feeders.

Already knowing the answer, I then ask, “So, do you want a traditional service or do you want a kick-ass goodbye party?”

“No schmaltzy, depressing stuff,” she replies. “I like the idea of friends and family just coming together to share the good times we had. Let’s do a party with invitations.”

Her right hand, the long elegant fingers now bruised and crooked with arthritis, trace invisible text in the air. “‘Come celebrate a joyous life.’ Oh, and put ‘no gifts necessary.’” She guffaws loudly. It’s a hopeful sound to me, and for just a second I forget how weak she’s become.

We agree that the perfect place to hold her bash is the Beardall Senior Center, where she’d been taking art classes for years. She has made dear friends there who continue to call and visit when she’s unable to attend.

“What about music?” I ask. “I’m thinking a combination of Klezmer and Barbra Streisand. I know those are your favorites.” She loves that idea and her imagination and sense of humor take off. “Oh, yes. Let’s do Bab’s version of ‘Happy Days Are Here Again.’” And we howl with laughter.

We come up with a few more Streisand songs including “Someone to Watch Over Me,” “Here’s to Life,” and “Second Hand Rose” since Mom is such a dedicated Goodwill shopper.

“I want balloons and good food. Let’s get TooJay’s to cater it.” They were the closest thing to a deli in Orlando and her favorite place for a kosher hot dog or pastrami sandwich.

“I wonder what your brother and sister would think if they knew you and I were planning my funeral?” She gives me a sly co-conspirator’s smile. My mother loves all her children, but she and I are bound by the secrets she’s told me over the years.

While we’re making more arrangements, my mother’s day nurse, Anne, who looks like she’s twelve, comes into the room. “We’re planning a party,” my mother tells her, and I know what’s about to happen.

“Oh, what’s the occasion?” Anne chirps, walking into the trap. My mother delivers the punch line with the skill of a borscht-belt comic. “My funeral!” she says. Buh dum bum.

Anne’s perfect features scrunch into a look that says, “Oh, shit, they didn’t tell me how to handle this in nursing school,” and she turns to me for help. I shake my head. She’s on her own.

My mother shares the party details and tells her in a no-nonsense tone, “It’s important to let your family know what your wishes are. After all, it’s your funeral,” and laughs at her own joke.

“What a good idea,” Anne fibs politely, backing out of the room. We know she’s headed towards the nurses’ station to tell everyone about the crazy lady and her daughter down the hall. We don’t care.

By now my mother is looking better, with more color in her cheeks. She reminds me of a tiny sparrow sitting up in that bed and suddenly the enormity of it all bears down on me and I want to go home. It’s time to wrap this up for now, say goodbye, and drive back to Tampa while I can still keep my eyes open. Leaving is always a push/pull.

Seeing the struggle on my face, she smiles and says, “You did good,” and tells me how happy she is with the arrangements we’ve made. I take a deep breath and give myself permission to leave, and finally, to grieve.

The Art of Gratitude

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During the last year of my mother’s life, she was boomeranging between home and late-night trips to the emergency room every other month. This often meant lengthy hospital stays that left her even weaker than before, and every time it happened, I found myself mentally trying to prepare for the end.

During one of my visits, after talking about her art classes which she’d been taking for years, and the latest scoop on my siblings, I took her hand and said, “I love you, and it’s important to me that you get the sendoff you really want, when the time comes. How about if we put our heads together and plan your memorial service?”

She clapped her hands and said, “Oh, that’s a great idea. What should we talk about first?”

So we mapped it out, from the music  (Barbra Streisand songs, including “Second-hand Rose,” since she was a passionate Goodwill shopper, and Klezmer tunes, which she’d grown up with in an orthodox Jewish home) to the food she enjoyed most (deli sandwiches from TooJay’s). With a loud guffaw, she suggested invites that said, “No gifts, necessary,” but lots of balloons. And in typical fashion, she cautioned against anything maudlin or sentimental, just wanting people to tell stories of the good times they’d shared.

When the time came, it turned out to be the perfect celebration of her life, filled with laughter, tears and memorable moments. As a final tribute, each guest was given one of her well-worn paintbrushes with a small tag attached that read:

In memory of Sally D

May 4, 1922-March 28, 2013

“The essence of all beautiful art is gratitude.” – Nietzsche

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My mother taught all of us about love, friendship, and the importance of being thankful in our everyday lives. To honor her amazing spirit, why not take a moment to leave a comment acknowledging what you are grateful for. She would have loved that.

 

Sharing The Hospice Experience

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Despite the fact that none of us gets out of this world alive, generally speaking we’re uncomfortable with the concepts of death and dying. In her book, Encountering the Edge: What People Told Me Before They Died, Karen Kaplan, an ordained rabbi and board certified chaplain, demystifies the process by talking about her experiences with hospice clients of all ages and denominations. Listening as they share their stories, their hopes and their fears, she offers the powerful gift of being heard, with warmth, gentle humor and deep compassion.  Below is an excerpt:

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As you accompany me to my patients, you may find yourself throwing various assumptions overboard. Such as when I sing to them, you might think I only sing sweet and religious songs like “Swing Low Sweet Chariot,” or “Kumbaya, My Lord,” or something based on the Psalms such as “May the Words of My Mouth.” Sam, twenty-eight years old and formerly a policeman, was one of the youngest residents in a nursing home relatively near my office; he was there on account of a disease that was stealthily stealing his motor abilities. Almost every time I stopped in, he gave me a broad delighted smile. But he decidedly did not want to hear a “girlie” thing like a hymn, though his mother did. She visited him at the nursing home practically every day to patiently feed him lunch served along with her cheery and loving talk. I often saw her during my weekly visits, and because she found my hymns soothing, I sang them for her benefit when she was around. She kept requesting them every time our visits coincided, although she had a thing or two to say to God due to the disease that was destroying her son. Sam, as I implied before, was not ambivalent about religion. He simply was not on board with it, so I tried to think of something nonreligious to sing. I had recently found out that one of the things Sam missed a lot at the nursing home was beer. Since I could not quickly arrange to have it made available (this would have required a doctor’s order), I thought a song about such beverages might raise his spirits at least in part. So I energetically sang “What Do You Do with a Drunken Sailor,” “Ninety-Nine Bottles of Beer,” and “In Heaven There Is No Beer.” All of these elicited his distinctive lingering smile. On subsequent visits, when I asked if he wanted to hear these again, he formed an even longer-lasting smile and said, “Sure!” Even his mom allowed herself a grin. At later visits when he could no longer indicate what he wanted to hear, his smile acted as confirmation.

One of Sam’s dying wishes was to get a tattoo showing his police rank and years of service. Given his condition, the procedure would have been painful, but his response was, in his soft high-pitched voice, “I’m tough.” Unfortunately, this was complicated to arrange. For one thing, he was not strong enough to leave the nursing home to appear at the tattoo parlor. There was some talk of getting a tattoo artist to make a house call, but by then, Sam was too weak to endure getting the tattoo. Soon after his disease had progressed to that stage, my husband Steve and I saw a performance of Hawaiian hula dancers, and I noticed that they had tattoos—not the kind we typically think of with pictures of hearts and arrows and letters, but of geometric shapes. One of the Hawaiian performers explained that their tattoos signify such matters as family connections and position in the social hierarchy. The higher the rank, the more elaborate and more numerous the designs. I thought of Sam, who wanted us to read his epitaph on his skin, proclaiming who he was and what he had achieved.

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Ordained in 1992, Karen was among the first 200 female rabbis worldwide. In 2007 she became a board certified chaplain and served hospices for seven years. Her goal in writing Encountering The Edge: What People Told Me Before They Died,  and her blog, offbeat compassion, is to provide a gentle entree to a forbidding yet mesmerizing subject. The book is available on Amazon in softcover, a Kindle version, and now as an audiobook, which can also be purchased on audible.com.