When you step into the role of caregiver for an aging parent, no one gives you a handbook. There are no centralized rules to follow or a checklist to tick off; in many ways, caregiving is a very individualized and solitary experience.
But just because your experience with caregiving might be unique to you, there are still underlying questions, fears, and concerns that are felt by every caregiver in your position. This is especially true in the midst of a global pandemic, with so many unknowns and uncertainties surrounding the future.
We’re not going to lie, there’s a lot to be worried about right now. We’re worried about our loved ones too. But there are practical matters that have to be discussed so that if a health emergency occurs, you are physically and emotionally prepared to handle it.
Push Yourself To Have Open and Honest Conversations
Dr. Cheri McDonald, PhD, LMFT, a specialist in grief and family therapy, encourages you to communicate from the heart, using empathy to recognize that these conversations can be difficult for the whole family, not just for yourself.
“Conversing successfully over the difficult and combating the resistance is an invaluable tool in building a successful relationship with anyone,” says McDonald. “And it can be challenging for most everyone.”
McDonald recommends showing up to talk with your parents and/or siblings, but then stepping aside in order to allow your loved one to share their thoughts and feelings without feeling hindered.
“This is a time of being there for them,” McDonald says. “When we are dealing with end of life issues, our own mortality tends to come up. Personal vulnerability is one of the greatest strengths in communicating with another. Be transparent and share your fears and hesitance to show up. Empathy can go both ways, allow room for your loved one to extend reassurance and compassion to help with the push.”
In her work, McDonald has found that more often than not, an aging loved one is more wise and ready to have the hard conversations than they are given credit for. And much of the time in doing so, she says, this loved one can provide comfort for their caregiver.
Put Plans In Place For A Variety of Situations
Life rarely unfolds according to plan, so running through a list of scenarios with your loved one while they are still healthy and able to tell you what their wishes are for end of life care is important. Robin Cohen, MSW, has a special interest in end of life issues and feels that end of life care is something that everyone of varying ages should be talking about right now in light of the pandemic.
“There are health care proxy forms and/or a living will designating someone to act as a health care proxy. This person knows what care the person is going to want in medical situations,” says Cohen. “Sometimes the best person to act as one's agent is not a close family member. When the time comes to follow through on one's wishes, a close family member might be too emotional and find themselves able to act.”
Cohen says that MOLST forms (medical orders for life sustaining treatment) include instructions for Do Not Resuscitate (DNR) and Do Not Intubate (DNI), among others. These instructions serve as legal medical directives that provide a person’s preferences for medical care should they be unable to make decisions on their own. Among the decisions that have to be made:
Who will serve as their medical proxy to make health care decisions?
Do you want to issue a DNR order?
Do you want to issue a DNI order, which would also prevent you from being hooked up to a mechanical ventilator to help you breathe?
Would you want to be fed through a tube?
Do you want to donate your organs?
Even if you’ve already discussed these things with your loved one in the past, Cohen suggests checking in with them again, as time and experience can sometimes have a way of changing minds.
“As people age, their choices may change,” acknowledges Cohen. “You might think the idea of living on some mechanical assistance is intolerable when you are in your 30's, but when you enter your 70's that can shift. My friend, whose mother had a terminal illness, asked her mother about possible end of care scenarios. What we thought might be intolerable when it came to care, her mother was welcome to. Her mother used to call our view the ‘arrogance of youth.’ As we age, reviewing our health care proxy and our wishes is a good idea.”
With the pandemic already having claimed over 30,000 American lives, these conversations are likely to be harder than normal because the threat has become very real. But Cohen only sees the silver lining: “Having a plan for your future allows you to live each day knowing the hard choices are already made.”
Talk About Practical Matters With The Whole Family
Family dynamics can complicate things when you are trying to make decisions in an emergency. This is why it’s important that everyone is on the same page about wants, needs, and roles before an emergency strikes.
If you are the primary caregiver for your aging parent but have siblings, set up a family meeting (or in corona-adjusted times host a conference call or video chat) to discuss what your parent’s wishes are and who will be responsible for what in the event of an emergency. Especially when it comes to medical care and end of life decisions, being able to talk about them with your family in a calm and productive way can prevent chaos and conflict down the road.
If you are the primary caregiver for your aging parent and do not have siblings or don’t have siblings who want to be included in the decision-making process, your primary focus should be making sure that you and your parent are on the same page about their care and end of life desires.
The bottom line is that everyone has to work together as a team to ensure that the loved one you are caring for--and care deeply about--can have the best possible experience during the worst possible time in their lives.
No Matter What, Stay Hopeful
“The goal of living each day with optimism and hope is always advisable,” says Cohen. “Even in my hospice work, there is always hope. Situations might be difficult, but we must deal with what is in front of us. We can choose to do it with love and grace, or bitterness. The issue must be dealt with, how you deal with it is your choice. Choose to see the beauty and the wonder in the world.”
“Life is about walking through the challenges of opposition in all things,” says McDonald. “There is joy and pain, health and illness, happiness and sorry, and life and death and everything in between. It is these times, we grow most in learning to overcome what was once ‘hard,’ as well as show up with more transparency and authenticity by opening our mind and heart.”
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