Over Memorial Day weekend I had another adventure in health care with my 97 year young father. Sunday morning he mentioned that his left thumb was sore, but it looked ok to me. By Monday morning, the thumb was swollen and very painful. We took a Memorial Day trip to the urgent care clinic. The experience reminded me how lucky I am that, over the course of our shared lives, I’ve come to know my dad well enough to make good decisions on his behalf. My definition of a good decision, in this context, is a decision that he would have made for himself, prior to his cognitive impairment (dementia). A good decision is not necessarily what I would want, for him or for myself, or a decision that is easy or comfortable. To know a person well enough to confidently make the choices he would wish, when he is no longer able to do so, is a tremendous gift.
Speak Up!
People never want to talk about this stuff, but it is too critical to leave unsaid. If receiving the type of healthcare that you want isn’t enough to motivate you, how about giving your loved one(s) peace of mind when they have to make tough decisions on your behalf? Over the decade or so that I’ve cared for my aging parents, this one gift has had an outsized impact on my ability to sleep at night and my quality of life. As a result, my partner and closest friends hear frequently about my own wishes for care. I understand how important it is that they know me and my wishes, so they won’t be stressed out trying to imagine the choices I would have made but can’t when the time comes.
This is a two part process: have the correct documentation in place and then have conversations about your wishes with the people who will have to make decisions when you can’t. If you think you’ll be one of the charmed few who lives independently right up until the night you die peacefully in your sleep, recognize that you’re in denial and take these steps anyway. Who knows, maybe being prepared for a less desirable outcome will keep it from happening, like carrying an umbrella holds off the rain.
Advance Directives—the legal documentation
Letting the world know your wishes for medical treatment is accomplished with advance directives. On its CaringInfo.com website, the National Hospice and Palliative Care Organization defines advance directives as “legal documents that allow you to plan and make your own end-of-life wishes known in the event that you are unable to communicate. Advance directives consist of (1) a living will and (2) a medical (healthcare) power of attorney. A living will describes your wishes regarding medical care. With a medical power of attorney you can appoint a person to make healthcare decisions for you in case you are unable to speak for yourself.”
You may not feel any time pressure to act on these—you’re not feeling old and near your end-of-life. However, things can change in an instant. If you are knocked unconscious during a league soccer game, wouldn’t you like someone who knows and loves you to decide whether you are put in an ambulance and which hospital you’re taken to? Hope you’ve got your health care power of attorney in place!
Unless you’ve been intimately involved with a somewhat lingering death, you probably don’t understand all of the choices that you face at that time. Respirator or not? What about a feeding tube? IV fluids? Our local hospice held sessions during which they helped people fill out living wills and explained what some of those end-of-life questions mean. During my mom’s last few months, her hospice caregivers did a good job of helping Mom and me understand the implications of these decisions. It felt a lot different in the moment than it had going through the living will like a checklist when I created mine. An estate attorney can help you prepare these documents. Consulting with those who are actively involved in end-of-life care so you can make informed choices is worthwhile!
Find the words
Creating a living will and healthcare power of attorney is the first step. Admittedly, even though it is the easier of the two steps, I have a hard time convincing my friends and financial planning clients to take this step. If you’re reading this, I hope you’ll be persuaded to take action! The second step is more difficult—you must let your nominee know what your wishes are in detail. Yes, you need to think and talk about subjects you would prefer to leave unexamined. Because we’ve been involved in caring for elderly parents for many years, Ron and I have conversations about our own wishes frequently. Stuff comes up in taking care of my dad and it’s an opportunity for us to think about what we would want in a similar circumstance…and then share that information. You’ll need to look for or create catalysts in your own life to start these conversations.
Directly expressing your wishes to your loved ones is the best way to put them at ease and receive the care you want. I was on the receiving end of this gift with my mother. My mom was a real communicator and we were quite close. She also remained sharp and lucid up until very close to the end of her life. As a result, we were able to discuss her wishes as each new decision unfolded. Because she knew her condition was terminal, we also discussed what was to come and I made sure I understood what she wanted. She wanted to die at home, not in a hospital, and she didn’t want anyone but immediate family to see her in her final days. She wanted people to remember her as she had been, prior to her final illness. This seems like a small thing, but it ended up being an important one. People wanted to come see Mom one last time, even after she was no longer able to speak. Just hearing voices in the other room made her anxious because she didn’t want to be seen. I had to put my foot down with my father and brother who felt we should honor friends’ wishes to see Mom one last time…and even insisted that they not invite friends into the living room, where Mom could hear their voices and would feel frightened. I knew what my mom wanted because she had told me. In a difficult time, it was a comfort to know that I was giving my mom her final wishes, even if I made loved ones unhappy in doing so. This is the gift I’m asking you to give your loved ones—tell them now what you would want!
Alternatively, life unscripted
Understanding isn’t always so easy to come by. I’ve learned much more about my dad through observing his choices over the years than I have from his words. He’s a warm, friendly, gregarious guy…but he likes to focus on making others happy. That doesn’t leave much room for talking about his personal needs or preferences. Dad is a man of action, happiest when he’s out and about, fixing what’s broken and taking care of others. While obvious and not particularly insightful, this perspective on my father is one of the keys to my making good decisions for him—to keep him active and involved. In addition, in his later years, I noticed Dad’s aversion to nursing homes (skilled nursing or long-term care facilities). After having both hips replaced at 79, he was sent to a skilled nursing unit for rehab. He took one look at the seriously impaired residents of the facility and checked himself out to do his rehab at home. Years later, my mom suffered a serious stroke and was transferred to a skilled nursing facility for rehab. My brothers and I took turns spending the days with Mom at rehab. Dad couldn’t bring himself, after one visit, to spend any more time with his beloved wife of 60+ years in that facility. This is the second principle that guides my decision making on Dad’s behalf—avoid nursing homes at all costs.
Knowing what makes life worth living for Dad means making decisions that go against mainstream medical recommendations, repeatedly. Dad has occasional falls and his assisted living’s protocol is to call an ambulance and send the resident to the local emergency room to be checked out. Nope, not my dad. When a 97 year old with congestive heart failure, diabetes and occasional atrial fibrillation shows up in the ER, he may be admitted for observation, especially if he might have a concussion. When you have low mobility and are a fall risk, observation means being confined to a hospital bed. For my dad, one day without getting up and walking decreases the odds that the next day he’ll even have the strength or remember how to get up and walk. Without the ability to get up and move, he can no longer engage in the activities that give him quality of life—going to baseball games, the theater, concerts, shopping, dinner at our house or restaurants. The risk of the loss of quality of life actually outweighs the risk of a concussion or his other chronic health conditions…none of which the medical professionals can fix, by the way. I understand and appreciate that the folks in the assisted living and the doctors at the hospital are all trying to act in my father’s best interest, to keep him safe and cared for. But they don’t know, as I do, what is really most important for Dad’s quality of life. So his assisted living knows that they need to call me, not an ambulance, unless there’s uncontrolled bleeding or a broken bone (and even then, they need to call me at the same time as the ambulance).
I share my own stories to illustrate the importance of knowing deeply the person for whom we’ll make decisions…and of giving this gift of knowledge of ourselves to those who will have to make decisions for us. It isn’t simple, comfortable or easy but that makes this gift even more priceless to the recipient. Isn’t this a treasure that you want your loved ones to have? Don’t leave your loved ones to try to decipher your wishes from your actions, as I’ve done with my father. Make it easier for them--talk to them today!
By the way, Dad’s Memorial Day visit to urgent care was relatively straightforward. He wasn’t happy having an abscess lanced, but he sure felt better afterwards! Antibiotics are battling the infection and he’s back to normal.
Want help crafting your own plan for care as you age? Give me a call at (336) 701-2612.
Investment advisor representative of and investment advisory services offered through Garrett Investment Advisors, LLC, a fee-only SEC registered investment advisor. Tel: (910) FEE-ONLY. Fair Winds Financial Advice may offer investment advisory services in the State of North Carolina and in other jurisdictions where exempted