When It Comes to Aging, ‘Preparing Is Caring’

By Berkis Oken, Hospice RN, VNS Health

For many, the holiday season will bring celebrations with extended family, perhaps for the first time in a few years due to the COVID-19 pandemic. There will be a lot of catching up to do. For people getting together with elderly parents, I suggest weaving into the conversation questions about how they are—and how they want to be—aging at home.

It is never too early for families to discuss how they would like things to go in the future, should a parent’s health decline, and that includes care at the end of life. This is known as “advance planning,” and it includes:

• Designating a health care proxy – Identifying the person or persons who the aging parent wishes to make health decisions for them if they are not able to do so for themselves.
• Discussing quality of life – Having a conversation to find out what the aging parent considers to be a good quality of life as they get older or become ill or frail.
• Making a decision on a “Do Not Resuscitate” (DNR) Order – This is a form that instructs health care personnel to avoid extraordinary life-prolonging measures such as CPR if the heart stops or intubation (external ventilation).

When I’m working with families, I often use holiday preparations as a prompt to begin a conversation. It might go something like this: “Mom, we are taking special care over the holidays to prepare the house, prepare the table, prepare to welcome the family. In the same way, there are steps we can take now to make sure that we, as a family, are well prepared for our what-ifs in the future.”

However you choose to begin your conversation, it’s important to let your loved one know that this is just a starting point for the conversation and that you’d very much like to hear their thoughts, insights or questions. If your loved one should ask a question you don’t know the answer to, don’t try and guess the answer. Instead, say you’ll find out and then look into it and get back to them. .

Day-to-Day Caregiving

While you are all together, it’s also a good time to assess an aging parent’s day-to-day caregiving needs and look ahead. While you may be the central part of your parent’s support network, you could need help as time goes on. You may live far away, have many work or family responsibilities, or have a parent whose health needs are too much for you to handle alone.

Furthermore, as people live longer, the children of aging parents are themselves often over 65 and may have their own health care needs. I worked with a centenarian (over 100 years old) whose primary caregiver, her son, was himself in his eighties and unwell. So I talked with the extended family to make sure others could pitch in, taking not only the mother to doctor’s appointments but her son, as well.

A support network might include home health aides (HHAs). In addition to keeping your loved one company, home health aides can play an important role in helping your loved one with daily activities such as cooking and housekeeping and getting to and from medical appointments, as well as reminding them to take medication or do prescribed home physical therapy.

If you are or—or you will—become your parent’s primary caregiver, it’s important to make sure you also attend to your own self-care. Caregiving is stressful and it can take its toll. Some important caregiver resources can be found at AARP, Family Caregiver Alliance and National Alliance for Caregiving.

When Is the Right Time to Have This Discussion?

I suggest “seizing the day” and discussing these topics whenever the occasion presents itself, because no time is ever exactly right, or exactly wrong, to have these conversations. But my colleague Leona Abrams—a longtime hospice social worker here at VNS Health who is passionate about the need for advance planning—offers another perspective, which is to think twice about having these conversations over the holidays. While she likes people to bring humor, compassion and a degree of lightness to such a conversation, there still is a seriousness to the subject that she notes might not sit right during holiday festivities.

Even if you decide the holidays are not the right time to discuss serious matters, elevate the conversations to your New Year’s resolution list to make sure you start out the year well-prepared for life’s eventualities.

I have worked with patients and families who have planned ahead and those who have not. Dealing with aging and end of life is hard enough without having so many important questions still unanswered. For example, I’ve worked with immigrant families whose parents expect to be buried in their home country, but no one has looked into the logistics—or expense—involved in carrying out such a plan. I also worked with a woman who was so prepared for the end of life that she had written out full instructions for her death, even packing a suitcase of clothes she would like to be buried in. She knew that this would give her devastated partner the time and space he needed to grieve without the clutter of logistics—and it did.

So when you get together this holiday season, I offer my motto (from experience!): Caring is preparing. Where there is order, there is calm—and a better quality of life for everyone.