though Mark has made huge strides, he may never completely recover,” said Trudi. “But he is still the same man I married, and now that we’ve rekindled our relationship, we can focus on making the most of the future.”
In summary, becoming a caregiver is a major undertaking. It’s important to consider the impact it will have on you and your family, as well as the care recipient. Caregiving should not be a solo endeavor, so assemble a good support team and create a plan. Having honest conversations with everyone involved regarding levels of care, expectations, responsibilities, resources, and preferences is the best way to begin. Of course, situations are apt to change, so keep communications open and remain flexible. And just as importantly, make sure that plan includes time to take care of you, because a caregiver who is physically or emotionally unwell cannot take care of anyone!
“It is always wise to look ahead, but difficult to look farther than you can see.”
—Winston Churchill
Grandpa’s Gift
Dealing with the seemingly endless amount of paperwork following the loss of a loved one can seem like drudgery, especially when grief is already wearing you down. My mom and I were doing our best to put things in order after my dad passed away, but we found that we could only handle bite-sized chunks at a time. One day, as we were heading to the bank to have some forms notarized, my then four-year-old son inquired where we were going. Without really thinking, my mom told him that Grandpa had given her some papers to sign. He thought about that for a moment, his little forehead scrunched up in concentration, and then asked, “Did Grandpa drop them down from Heaven?”
My mom, caught off guard by his question, got a bit teary-eyed and responded, “No, he left them here for me before he went to help me out.”
“Oh,” said my son, “that was nice of him.”
My mom and I exchanged a look and broke into much-needed smiles. Oh, to be four years old and see the world so simply!
Of course, my son was right; it was nice of my dad to leave things in order. We were thankful that he was organized and made it easy for us to find important documents, including account numbers, insurance information, and even the deed to his burial plot. It made a difficult time much easier. That was my Dad; always thinking of other people.
However, I discovered that when it came to end-of-life wishes and funeral plans, he had left no information. I always assumed that he and my mom had discussed these things, but they never did. As is turned out, a do not resuscitate (DNR) or healthcare proxy was not needed, but I couldn’t help wondering what would have happened if he had been put on a respirator or other life support. Did he want those measures taken? Not knowing his wishes would have left us with a heart-wrenching decision. As far as funeral plans, I suspect my dad didn’t really care. He would have been happy to have a no-frills affair involving a fishing boat and some cold beer! But since we didn’t know what he had in mind, we did our best to plan a funeral that included the things he loved, lots of wonderful memories, and the many people whose lives he touched.
After the dust settled, and my mom and I had some time to just sit and talk, we decided that the two of us needed to have some important conversations. Thankfully, she realized the significance of putting her affairs in order and expressing her wishes, so we consulted an attorney and created a living trust, with me as trustee. In the process, we talked about everything, from what she wanted to wear at her funeral (“Bright red, because I’ve never been a demure, pastel person,” she declared.) and what music to play (“Something upbeat, please.”), to starting a small college fund for my son. We discussed her end-of-life wishes and she signed a DNR. We took a financial inventory and made a budget. These discussions were sometimes difficult, but they were also some of the most meaningful conversations we had. And, once the documents were signed, copied, and put safely away, we felt a sense of relief. It was reassuring to both of us that things were in order. It occurred to me that we should have had these conversations much sooner, but at least we had them before it was too late.
On our way home from the final visit to the attorney’s office, my mom let out a big sigh and announced, “Well, now that that’s done, we can concentrate on more pleasant things.”
“Like what?” I asked, though I had a sneaky suspicion.
She replied, “Stopping for a hot fudge ice cream puff, of course.”
I knew it!
Looking Ahead
When asked, most people agree that having conversations about end-of-life wishes and putting their affairs in order is important, but studies show that nearly 44 percent of those 45 to 65 years old do not have a will or advance directives. In 2013, a national campaign called the Conversation Project conducted a survey that revealed that 94 percent of Americans felt these discussions were important, but less than one-third actually had these dialogues with loved ones. Furthermore, while 60 percent of those surveyed felt that making sure their family was not burdened by difficult decisions was “extremely important,” 56 percent of respondents had not communicated their end-of-life wishes. The campaign, which is aimed at helping people initiate discussions about end-of-life wishes, found a variety of reasons why folks hadn’t broached the subject, including: “It never seems like the right time,” “I don’t want to upset my loved ones,” “I’m not sick yet,” and “I don’t know how to start the conversation.”
These conversations are especially important if you are providing care for someone, but ideally, they should occur much sooner. Accidents or sudden illnesses can strike at any age, which means all adults should have advance directives in place. Obviously, the best time to discuss end-of-life wishes and the type of care preferred is before a health crisis occurs, and the person is under duress. Aging, illness, trauma, and even medication can make it impossible to have meaningful conversations, and no one wants to make hasty choices in a time of crisis. By preparing in advance, you can reduce stress for yourself and your loved ones and make educated, thoughtful decisions. Think of it as a gift for both you and your loved ones.
Legal Documents
Having honest, open conversations is a great starting point, but the decisions must be put in writing to be legal. Often the term “advance directives” is used to describe several legal documents that describe a person’s preferences regarding treatment if he or she experiences a serious accident or illness. These legal documents speak for you (or your loved one) if you are unable to speak for yourself. If a person is unable to make their own healthcare decisions, family members and physicians will consult a patient’s advance directives for guidance. These documents typically include:
A Living Will—A legal document used to outline a person’s wishes regarding life-prolonging medical treatments, such as a respirator, ventilator, feeding tube, or resuscitation. It may also be referred to as an advance directive or healthcare
