How to Advocate For An Elderly Parent
One of the most important responsibilities a working daughter has, is advocating on behalf of the person you care for. Whether it’s acting as their healthcare advocate or speaking up for them at their senior living facility, you are often their strongest voice and biggest support.
Being an advocate means showing up as a warrior, a professional, and a human – all at the same time. We’ve got thee resources to help you do just that.
Mary Daniel is a board certified patient advocate and a family caregiver. Her husband was diagnosed 9 years ago, at the age of 59, with Alzheimer’s. Mary vowed at the time of his diagnosis to be by his side every step of the way. And she was, until March 2020, when the skilled nursing facility where her husband lives went into lockdown. What Mary did next is truly inspiring. Watch our interview to learn more.
In this video, Mary shares some great tips on how to be a fierce advocate for the person you care for.
Check out Mary’s Facebook group Caregiver’s for Compromise. She is fighting for caregiver’s access to family in skilled nursing facilities – “because isolation kills too.”
* At one point in the interview my 86 year-old uncle walks in #lifeofacaregiver! And later, Mary’s foster pup gets in on the action.
Tips for Advocating Like A Boss
Remember you are an equal member of the care team. Caregivers must be included in important decisions and treated as members of the care team. Remind yourself, and the medical providers if you have to, that you are the expert when it comes to your person. Your knowledge of the patient – their history and their wishes – should be weighed equally against their medical advice.
Phrases you might use:
“My father’s baseline is….
“My mother does not want any invasive treatments. Let’s discuss other options.”
“I want to make sure I understand what you’re recommending. Let me repeat it back to you.”
Face the problem of the day. This is something Mary Daniel talks about in her interview. Speak up when an issue arises. (If you see something, say something.) Don’t let problems fester.
Phrases you might use:
“Can you help me understand…”
“I noticed the front door is unlocked and that concerns me.”
“No one is responding to the call button. What’s the best way to get assistance?”
Remember you are a consumer too. You are paying for services and therefore you have the right to have your needs met and your voice heard.
Phrases you might use:
“This is what I observe…. And this is what, as your customer, I’m asking…
Offer to be part of the solution. Today’s reality is that medical professionals and senior living administrators are overworked and often understaffed. Paid caregivers are notoriously underpaid. So, offer to be part of the solution if you can.
Phrases you might use:
“How can I help?”
“Is there something I can do to remedy this situation?”
“Would it help if I…”
Address management instead of staff. If you have a concern, take it to management or administration. Let the hands-on workers do their jobs and address changes and policies with the people who set them. Taking this route also means you don’t have to worry that speaking up will impact the level of care your parent receives.
Phrases you might use:
“Help me understand…”
“If this was your parent, what course of action would you recommend?”
Smile AND be firm. Remember the proverb, “You can catch more flies with honey than with vinegar.” You don’t have to be a pushover. You also don’t need to be adversarial. Be the person people like to deal with – who also gets things done!
Phrases you might use:
“So what’s the next step in resolving this issue?”
“Thank you for your time. When can I expect to hear back on next steps?”
“What’s a reasonable amount of time for me to wait for a reply?”
Do Your Homework!
Key to being a strong advocate, is being prepared. Know the facts. Do you homework. Be prepared. Here are some key factors to consider:
Hospital Discharge: Approximately 40 states . have passed the Caregiver Advise, Record, Enable (CARE) Act, which requires hospitals to:
- Record the name of the family caregiver on the medical record of your loved one.
- Inform the family caregiver when their loved one is to be discharged.
- Provide the family caregiver with education and instruction regarding the medical tasks they’ll need to perform for the patient at home.
That means you get NOTICE and VERBAL INSTRUCTIONS before a family member is sent home with you. Learn more here.
HIPAA: The Health Insurance Portability and Accountability Act of 1996 is a federal law that protects sensitive patient health information from being disclosed without the patient’s consent or knowledge. However, HIPAA PERMITS covered entities to share information that is directly relevant to the involvement of a spouse, family members, friends, or other persons identified by a patient, in the patient’s care or payment for health care.The covered entity may also share relevant information with the family and these other persons if it can reasonably infer, based on professional judgment, that the patient does not object. Learn more here.
Documentation. Have these documents handy:
Healthcare proxy aka Durable Medical Power of Attorney. Your parents should
each designate one person to be their health care proxy. This person, often the
primary caregiver, has the authority to make medical decisions for a patient in the
event they are unable to. Some people have a proxy statement prepared by an
attorney while others complete a form at their doctor’s office or at the hospital.
Most proxies require at least two witnesses to sign them, but requirements vary
state by state. Also, proxies can be changed, so if, for example, your parent
names someone who can no longer fulfill the role, they can assign someone
Advanced directive aka living will. An advanced directive, sometimes referred to
as a living will or physician orders for life-sustaining treatment (POLST), clearly
spells out what, if any, medical intervention your parent wants to receive in
certain medical situations, in the event they cannot communicate their
preference. In some states, a patient can complete an advanced directive with
their primary care physician. These directives cover whether or not a patient
would want a feeding tube, for example, if they were unable to eat.
DNR. DNR stands for Do Not Resuscitate. This can be a doctor’s order or a legal
document that tells medical staff not to perform cardiopulmonary resuscitation
(CPR) or advanced cardiac life support in the event a patient stops breathing.
More on Advocating
Being a health care proxy for a loved one can be a tough role. It means advocating for an elderly parent when your parent cannot do it for themself. To help prepare you to be a strong advocate, here are my three tips, vetted by experts. Read more.
