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Five Wishes: The Aging With Dignity Guide

Posted on January 15th, 2016 by kim

by Kim Keller

The decisions we made still haunt me. And I suppose they always will.

It’s not that I think we made the wrong choices. In fact, I’m certain we made the right ones. What I can’t shake is the belief that my father should have been leading the discussion about his own healthcare choices.

Instead, he wasn’t even a participant.

My dad had a living will. So my parents thought they were covered when it came to the recommendation, “Have a discussion with your family about end-of-life issues.”

But missing from that recommendation was the word “thorough” — as in, “have a thorough discussion about end-of-life issues.”

The living will only told us that Dad didn’t want to be kept alive by artificial means. What the document never anticipated were all of the other more likely scenarios that could develop. When some of those unforeseen events did ultimately play out, it was too late to secure his input and guidance.

Making these critical decisions for someone we loved so much, such as stopping aggressive medical treatments or starting hospice care, was a major impetus in the creation of In Care of Dad. My sister Karen and I wanted to spread the word: Have those end-of-life discussions before it’s too late, and make them meaningful!

Which often prompts people to ask us, “So how do I do that?”

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If Only There Was A Second Time Around

Posted on July 9th, 2015 by karen

by Kim Keller

As another anniversary of our father’s passing — July 16th, to be exact — approaches, my sister Karen and I find ourselves once again filled with regret for all the lessons learned, far too late in life, about how to help someone you love through serious illness.

Dad’s health issues lingered for quite some time, but during the last year of his life, he deteriorated at a tumultuous pace. It was a painful ordeal, and if it were possible to go back in time, Karen and I would do many things differently.

We would have more actively:

Insisted that our father seek better medical care earlier in his illness. The critical lesson here: sometimes you just have to travel farther for better hospitals and doctors. Dad made his choices based primarily on location, and while we often questioned the quality of his doctors and their related facilities, we weren’t comfortable pushing this point with him, until it was far too late in the game. Given what we now know, we would have kept researching hospitals in the region until we found a teaching hospital with MAGNET status. Teaching hospitals generally attract higher caliber doctors, and a MAGNET designation indicates an impressive level of quality care bestowed upon patients by the nursing staff. Naturally, there are great hospitals that are not teaching facilities, as well as many without MAGNET status, but it’s an excellent place to start.
Focused on how Dad could reduce the amount of medications he was taking. He had lots of specialists, especially as his health unraveled, and each doctor added a new prescription or two. Not enough attention was paid to the possible side effects and adverse interactions caused by combining so many medications. In fact, rather than scrutinizing the burgeoning list of drugs that were being pushed at our father, each new medical issue that cropped up heralded another new prescription. Given what we know now, we would have discussed the medication list with all the various specialists, starting with these five questions: (1) Are any of Dad’s symptoms a possible side effect of another medication? (2) What are the potential side effects of each drug? (3) Is this drug safe and/or effective for someone over 65? (4) Are there any issues to watch out for when this drug interacts with Dad’s other current medications? (5) Is there any harm in changing Dad’s diet and/or exercise regimen rather than prescribing another new medication? And to help us with our own research, we would have used MediGuard.com, which is a great tool for fleshing out medication problems.
Talked with our father about end-of-life issues. Dad already had a living will in place, so we thought we were covered in this important area, but we were wrong. We soon discovered that many common scenarios needing to be fully vetted are not handled by the average living will. For example, do you continue with aggressive treatments when they can’t cure you but can only sustain a bedridden life? Not an easy question to discuss, and we certainly never discussed this as a family, but at a certain point late in the illness, Dad was no longer able to give his input, and continuing treatments no longer held any promise of recovery. We decided to maintain the full-on treatments, but we’ve never been sure this was what Dad wanted. If we’d known back then about the critical importance of a wide-ranging end-of-life discussion, we would have used www.agingwithdignity.com. It’s an important resource that walks you through the fundamental questions that every family needs to consider.
Established ourselves as coordinators for keeping track of all communication between and amongst the various medical personnel and caregivers attending to Dad. Karen and I just didn’t understand, at least not at first, that someone had to pull together all the various pieces of information relating to Dad’s care, from medication mandates and treatment instructions to exercise orders and diet alterations. Counting on the medical teams to coordinate and communicate was not realistic. We eventually learned to keep track of everything and to communicate everything. There was nothing too big or too small. Here are some of our charts and checklists.
Created a support team around us to help us anticipate needs, develop a plan, make better decisions, and clue us in on available resources and tools. Frankly, back then we didn’t even realize we needed a support team, other than our father’s medical attendants. Dad had been sick for so long that we never would have believed we were facing his final year. Without a support team, we spent way too much time being reactive, putting out fires, floundering with decision-making. If we could do it all over again, without the pain and torture that Dad surely experienced, we would’ve reached out to people who had been down this path before. There are many places to start building a team: in-home care agencies, for example. Or local religious organizations, many of which have outreach programs, geriatric care managers, and senior centers. When we finally did build our team, we were relieved and finally confident that we were making sound decisions. We didn’t understand at that point how close we were to the end, but we were at least able to spend our time in a far more important and valuable way: loving our father and enjoying every last minute with him.

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End-Of-Life Conversations: We Need To Talk

Posted on April 29th, 2015 by karen

Amanda and her mom

by Amanda Geffner

During my mother’s brief battle with terminal cancer, I was only 31, still single, and in grad school with career plans best described as uncertain. At the time, I placed a high priority on showing my mother — and myself, if I’m to be fully honest about it — that I was doing okay and going to be fine, despite the impending tragedy. It wasn’t a belief in which I was fully invested, but it felt like the right message to send.

I recall my mother eating tiny bits of melon (it was all she could keep down) as I modeled a dress bought from a street vendor. My brother and his longtime girlfriend quickly planned and held their wedding in her home. We wanted to let Mom know the lives she’d help create for each of us would go on, which provided her a modicum of comfort — or so I believed. I didn’t let her see the part of me that felt life would not, indeed could not, go on without her. That part I kept hidden, to spare her, and — again, to be fully honest — because I was too scared to voice this even to myself.

And so, on the day of my brother’s wedding, after the vows had been said, I sat on my mother’s couch with my head in her lap, weeping silently, hoping she couldn’t tell, and swallowing the words I couldn’t share about how much I would miss and still need her after she was gone. In retrospect, I can forgive myself, and my mother, for not managing to go there together, given each of our limits and the extent of our fears at the time, but today I find myself encouraging others to be more open with a dying loved one, if they can.

When someone we love is facing death, of course we care tremendously, but we often tiptoe around it, in an effort we perceive as protective for both our loved one and ourselves. However, our protectiveness often serves to increase our loved one’s sense of isolation, as well as our own. Instead, what we can do is acknowledge the painful truth, as well as our fear of it, and just be open and truly present with them. This takes courage, centering oneself, employing long deep breaths, and keeping oneself in the moment. Doing so allows us to better prepare ourselves and also better prepare the loved one who is dying.

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10 Essential Things To Do Now

Posted on April 1st, 2015 by kim

by Kim Keller

My sister Karen and I learned a hard but valuable lesson not so long ago. Even with all the work we’d done on this website, we found out we were not as prepared as we thought, or hoped, we were. The simple truth is, there are certain things that should be implemented to help ensure your parent’s security and well-being in case of sudden illness or decline due to aging. Because of our dad’s prolonged illness, we had many of the items listed below already in place, but there were some things on this list that we just didn’t think about until our mom had a stroke. It took us completely by surprise because she was healthy and leading an independent and active life. For example, we never dreamt it was time for a medical alert button, but her stroke served as a wake-up call for all of us.

Here’s our list of the 10 most valuable things to have in place for your parent right now. In our Checklists & More section, you’ll find blank templates for each of the various lists we recommend below.

A list of all medications your parent is currently taking (including over-the-counter meds, vitamins and herbs). The list should specify all pertinent instructions (for example, 1 pill each morning with food), as well as the reason why each medication is taken (for high blood pressure, for cholesterol, etc.). It’s imperative to also note any allergies to medication.
A medical history, which includes all surgeries and conditions, hospital stays, allergies, important immediate family medical history (for example, if your mom’s mom had breast cancer or your mom’s dad had diabetes), your parent’s birth date, and also be sure to mention information such as whether your parent has dentures, a pacemaker, a hearing aid, glasses, prosthetics, is a smoker, etc. – basically, try to give a complete picture of your parent’s physical and medical state. Also be sure to include health insurance contact and account numbers.
A contact list of all relevant doctors.
Post on your parent’s refrigerator a copy of the medication list, medical history and contact list of doctors, along with all other emergency contact numbers. It’s critical that these lists be easy to find in case of any emergency medical scenarios, such as EMTs coming to the house.
Set up direct payment for bills and direct deposit for income. We did all of this online so that we’d have direct access to each account (billing statements, etc.), and we created a list that includes log-on user names, passwords, contact information, and account numbers, as well as banking information (account, routing and debit card numbers). Having your parent’s social security number is also important. Now, if your parent is still in good health, and these precautions seem premature, then at least have all of this information compiled and ready to go in case the need should arise. Needless to say, this is not the sort of information you want to leave lying around where anyone might glimpse it, but having it compiled in some secure location is still important in case of emergency.
A durable power-of-attorney allowing a trusted person or persons to handle your parent’s personal business affairs, from banking to investments to real estate, etc. A “durable” power-of-attorney is preferable to a standard power of attorney because it’s set up specifically to deal with the possibility of your parent’s becoming disabled or incapacitated.
A living will is essential as an advance medical directive regarding any life-prolonging procedures (such as being kept alive on life-support equipment). A living will can also direct any organ donation, if this is your parent’s choice. A living will is not a Do Not Resuscitate order (commonly called a DNR). A DNR form can be picked up in any hospital and must be signed by your parent’s doctor. It’s undoubtedly difficult to talk with your parent about personal end-of-life wishes, but it’s very important to do so. These issues can prove to be divisive to a family if your parent’s requests have not already been put down in writing. We recommend using Five Wishes, created by the non-profit organization Aging With Dignity.
A healthcare proxy is also necessary in case your parent is incapable of making his or her own healthcare choices regarding such options as surgery, hospice, experimental treatments, etc. A living will already designates a healthcare proxy, but if your parent decides against a living will, it’s essential to have a healthcare proxy drawn up separately.
A will or trust to make sure that your parent’s final decisions regarding the disposition of any estate are followed.
A medical alert button in case of emergency. We set up an account for our mom with Response Link at 1-800-894-1428, responselink.com, and it costs $38.95/month. They provided her with an alert button, which she wears around her neck, and a two-way communication device for her home in case of an emergency. There are many terrific services available – we just happened to choose Response Link because it was recommended to us by a friend. Here’s an important tip: Avoid any service that requires you to sign a long-term contract.

Regarding the legal documents mentioned in numbers 6 through 9 above, you can either use an attorney or draw them up yourself with the help of an online site such as Nolo.com, which offers blank forms for these various documents. If you have a complicated legal situation, we recommend you hire an attorney.

Kim Keller is the Co-Founder of In Care of Dad. She lives and works in New York City.

Photo is by Karen Keller Capuciati.

This blog was originally published on April 7, 2011.

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Coming To Grips With End Of Life Wishes

Posted on February 25th, 2015 by karen

by Stephanie Haen

Little did I know when Daniel walked into my office for our first session that I would soon be faced with helping him and his wife Susan — a pair of young newlyweds — come to grips with a decision that would surely hasten the end of Daniel’s life.

Eight months earlier, at the age of 24, Daniel had been diagnosed with brain cancer. He had recently decided to forgo the prescribed treatments, as they were causing him severe pain and daily bouts of vomiting, but, more importantly, they had failed to yield any positive results. Daniel had decided that he didn’t want the time he had left to be filled with additional sickness and pain. And while he appeared to be at peace with his decision, Susan clearly wasn’t. Daniel asked me to meet with them both, to help his wife better understand his decision and come to terms with it.

As human beings, death is the one thing we all have in common. Whether it’s facing our own mortality or someone else’s, we will all experience that dreaded word at some point. For most of us, all it takes is an earnest discussion about death to unleash our fear and anxiety, even when we’re talking about someone we hardly know. But when a loved one is the focus of the conversation, our decision-making abilities are severely strained.

Often, it’s hard to understand the choices that are made when a person is facing death, disability or severe chronic pain. We are all unique in how we feel, think, and perceive ideas, especially an idea as profound as death. So what happens when a loved one makes a decision you disagree with, especially when it’s a decision you don’t understand or consider to be wrong or cowardly? How do you stand by and allow your loved one to make such a decision?

Consider the following:

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Life With Pop: On Growing Old

Posted on November 5th, 2014 by karen

An excerpt from the book, Life With Pop: Lessons On Caring For An Aging Parent, by Janis Abrahms Spring, Ph.D., with Michael Spring.

October 16, 2005

We grow up when we lose our parents. In facing their mortality, we face our own. Suddenly, we’re orphans with no one to shield us from the finiteness of our lives. There’s no hiding from it – our turn is next.

When I think of my inexorable decline, first losing a life partner, then losing life itself, I cringe. Fortunately, having cared for Dad, I feel more prepared for what lies ahead, as though I’ve taken a course in being a good Old Person. Thanks to him, I have a better sense of what it takes to morph gracefully into elderdom.

What exactly have I learned? Here’s a list of reminders that may help me survive old age and be the kind of model octogenarian my friends and family will want to have around. I plan to file it away in a drawer. If I’m lucky, I’ll live long enough to need it, and remember where it is.

Be sure to show appreciation when your kids extend themselves to you. They have so much competing for their time. Don’t take those Eskimo Pies in the freezer for granted; they didn’t just magically appear.
Make your health-care wishes known to your kids with the utmost specificity. Don’t saddle them with this responsibility, or you may find yourself dining on kosher fluid piped into your belly, against your will. Your input will free them from having to make these onerous and morbid decisions on their own.
Don’t be ashamed to use a cane or walker. It’s dumb to let vanity trip you up. It’s selfish, too, because your children will need to manage your recovery.
Don’t criticize yourself for wanting to steal bananas from the dining room, or for worrying about the cost of fruit salad. It’s an age-appropriate preoccupation.

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Getting Your Affairs In Order

Posted on July 27th, 2014 by karen

by Kim Keller

You can peek beneath or behind nearly any object in my mother’s home, and you’ll find a little piece of masking tape with someone’s name written neatly across it.

“This is from my great aunt, Mary Priest, who was a Methodist missionary,” Mom explained, cutting a piece of tape for a little carved coconut that’s been fashioned into a decorative container. I’ve always loved this item, so I made sure my name was on the masking tape. “Mary brought it back from Japan in 1881!”

My mom loves organization. Keeping things orderly gives her a sense of peace and comfort. She also enjoys knowing that, when it’s her time to go, she is passing along the things she loves in an orderly fashion.

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A Living Will Is Not Enough

Posted on January 29th, 2014 by karen

For the next few weeks, we are featuring some of our favorite blogs from years past. This entry was first published by In Care of Dad on February 24, 2011.

by Shira Tannor

My dad, a retired psychiatrist, died on St. Patrick’s Day 2009. Though he was nearly 84, his death came upon us suddenly in a whirlwind few days of pain and confusion. Dad had been diagnosed with squamous cell skin cancer and had had two surgeries in the span of three years, both times bouncing back from what seemed like nothing more than a mere nuisance. A robust man who rarely took as much as an aspirin, he soldiered on with confidence and optimism and so did we. But when his cancer appeared for a third time, and he was facing what he knew would be a prolonged and nasty fight, he understood with quiet dignity that this was not just another nuisance and opted for an aggressive course of chemotherapy as his last best shot. None of us thought when he started down this path that just two weeks later he’d be dead.

Dad was a responsible and pragmatic man who adored his family and kept us close. No surprise then that he had taken good care to provide for us in death as he’d always done in life. There was life insurance to cover funeral costs, burial plots for the entire family, a Family Trust, Durable Powers of Attorney, Health Care Proxies and a Living Will. Everything was up to date and in place. But when Dad suddenly lay intubated in a hospital bed, hooked to a bevy of life-prolonging devices, we discovered the hard way that he’d forgotten something critical — he never, ever talked to us about how we, as a family, would and should deal together with the difficult and heart-wrenching decisions to end his life.

For a man who made it his business to understand human nature, and who presided over family meetings on far lesser issues, Dad was strangely silent on this one. Keenly aware of our differences, chief among them that my brother, the firstborn and beloved only son, is an Orthodox Jew, Dad somehow never engaged us in any discussion of what we should do if faced with the terrible prospect of having to end his life. The plain vanilla language of his Living Will directed us to remove him from life support if he couldn’t live on his own, but there was no further instruction and, in those awful few days when his life had essentially slipped away and we most needed his wisdom, there were no more words. I wish there had been. We all did.

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Life With Pop: The D Word

Posted on September 5th, 2013 by karen

An excerpt from the book, Life With Pop: Lessons on Caring for an Aging Parent, by Janis Abrahms Spring, Ph.D., with Michael Spring.

September 29, 2005

I’m at the hospital by nine. My heart is pounding — and breaking.

Dad lies stiffly in bed, unable to lift his head, so I draw my face up close to his and take his hand. We spend a few minutes chitchatting, warming up. He may not be alert for long, so you’d better get into it now.

“Dad,” I say gingerly, “we need to have a serious talk about what’s happening to you.”

He seems to be listening with every nerve in his body. I speak as slowly and gently as I know how, for his sake, and mine. “The reason you got pneumonia is because when you swallow, the food drips into your lungs.”

I look into his eyes to see if he’s registering what I’m saying. He’s with me every step of the way.

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Wrenching Choices At The End Of Life, Part II

Posted on June 24th, 2013 by karen

by Joan Blumenfeld, MS, LPC

I read an obituary last week that gave me pause. It was for a Mr. John Davis who died at age 87, peacefully, at home surrounded by his loving family. A true marvel in this age of high-tech medicine, an incredible array of medications for every ailment, and frequent hospital admissions for the elderly. I was envious!

Too often these days we die alone in a hospital bed, tubes in every orifice, surrounded by machines that beep and blink and hordes of medical personnel, all struggling to prolong life instead of allowing for a natural death. We seem to be so much more concerned with preserving life at any cost than we are at letting go when it’s time.

In the interest of my own end-of-life concerns, I have signed advance directives that give my adult children the responsibility of making decisions for me if I am unable to do so for myself, and I have spoken to them about this innumerable times. I know full well that when such a time comes, they will have to make difficult choices between maintaining my life even if there is no quality left or letting nature take its course.

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