Throughout our lives, we may be asked to give care to a loved one. Whether for a child or grandchild, a parent or grandparent, a sibling or close family friend, more than 65 million people are caregivers for a chronically ill, disabled or older person during any given year. That’s 29% of the U.S. population, and caregiving itself can take 20 hours or more each week. (source)
Caregiving also may not just be happening in the home, and it usually goes beyond just helping someone with basic tasks. Often, those in the role of caregiver are asked to serve as a health care proxy, either officially or informally, and that is a responsibility and an opportunity.
In our partnership with The Conversation Project, we’ve talked about the importance of not only having an end-of-life plan for yourself, but in sharing that with loved ones. The best way to gauge whether you are truly prepared is to ask yourself the question: “If something unexpected happens, who will speak for me?” Are you happy with the answer?
We’ve discussed the ways that you can select and work with a proxy or medical decision-maker yourself, as a future patient:
- It’s Always Too Soon Until It’s Too Late
- Please Pass the Potatoes (and The Conversation Starter Kit)
- Chocolates, Flowers and End of Life Wishes
- It’s Time to Make Some Decisions
But even as you are asking someone to be your proxy, you may find yourself serving that role for someone else. And that side of the two-way street is just as crucial.
In our candid conversation with Ellen Goodman, the co-founder and Director of The Conversation Project, she shared her regret that she and her mother never talked about how to handle the final years of life, and that as a caregiver, she was left to make not just the big decisions but the small.
And this story from Judy highlights the job and responsibility of being in charge of someone else’s wishes. Judy had a traumatic experience with her 90-year-old mother’s death and decided that she didn’t want anyone else in her position to face the same thing.
So, if you are a caregiver, make sure that you initiate the conversation if your loved one does not. If you’re acting as a health care proxy — someone who is making health care decisions for someone else — it benefits everyone if you have a written document to follow.
Some of the things you may be asked to do as proxy:
Express your loved one’s wishes to a doctor or health care provider, and be prepared to answer questions, make new decisions and ultimately, stand behind the plan.
Health care proxies have legal power to make medical decisions when someone is not able to make them him or herself. That means that you may need to review medical records, speak with doctors (including in emergency situations) and enforce the wishes that your loved one has expressed.
That’s why it’s so crucial that before this directive is needed, you are clear on what matters the most. You really do become the voice of the person for whom you are caring.
Make decisions on behalf of your loved one that you don’t necessarily agree with.
This is so important! You will have an emotional tie to the person and the situations that you are faced with. That’s not a bad thing — it’s likely the reason you were asked to stand as proxy in the first place! But understand that your loved one may not want a lot of medical intervention while battling a terminal disease or may want all possible treatments, no matter the cost or the side effects. These aren’t abstract situations — they’re very real decisions you may face.
Example from The Conversation Project’s How to Choose a Health Care Proxy & How to Be a Health Care Proxy kit: what would you say if a doctor told you “Your mother has pneumonia. Do you want us to start antibiotics?” or “Your brother is no longer able to take food by mouth. Do you want us to insert a feeding tube?”
Stay strong even when other family members and friends question you and question the decisions you and your loved one have agreed to.
Grief is not always a rational emotion. When someone is ill or dying, those who are on the sidelines may feel a loss of control and of course, extreme sadness and often anger at the situation. They can’t take it out on the person directly, and you may be an easy target. Prepare yourself to empathize, to share their grief but also, to stand firm. You are giving your loved one an incredible gift, and empowering him or her to be in charge of what happens during the most vulnerable time of life.
The Conversation Project’s new How to Choose a Health Care Proxy & How to Be a Health Care Proxy kit is a great tool for caregivers. It’s free to download and you and your loved one can sit down and review all of the responsibilities of a proxy. If you agree to take that role, you can download the FREE Conversation Starter Kit and create a document that can be used in emergencies and at the end of life.
Without a doubt, becoming a caregiver will be emotionally and physically stressful, and you may find yourself delaying the grieving process itself, only to face it head-on after a loved one’s life ends. And if you are thrown into the role unexpectedly or because nobody else steps up, you may even experience some anger or bitterness.
It’s a topic we discussed with Margery Pabst Steinmetz on Growing Bolder Radio. Margery is dedicated to giving caregivers the resources, hope and inspiration they need to carry on with one of the most challenging, taxing and rewarding tasks any of us will ever take on — caring for our loved ones.
But this is also one of the most important and most fulfilling things you will ever do, and with the power of an official proxy, you may even see this as a blessing rather than a burden. You are speaking for someone who may not be able to do it him or herself. You are giving the person you love the chance to have control when almost all control is taken away. And you are offering a gift that some may never receive. Stay strong, caregiver. You are Growing Bolder.