It's normal to worry about our parents during their golden years. Everyone gets frailer with time. Each day, we move a little slower. Time even robs our voices of their youthful quality, gradually weakening them to an entirely different tone and pitch. When we look at our aging parents, what we see stands in stark contrast to how we remember them from our childhood, when they seemed almost invincible.
As adults, children often go on to build their own lives, start a career, and, perhaps, even get married and have children of their own. So, when something happens to a parent, it both shatters the ever-fading façade we had of their invincibility, and can add pressure to an already stressful life — especially when you must become a parent's caregiver.
Changing roles as your parents age
First, understand that you are not alone in taking on the responsibility of caregiving. According to the study, Families Caring for an Aging America, nearly 18 million Americans are caregiving for an older adult.
When adult children step in, either temporarily or permanently, as caregivers, it can complicate the parent-child relationship — as well as the primary caregiver's other relationships, including those with siblings and a spouse or partner. The one who traditionally nurtured, supported and worried about the other now becomes the object of such feelings because roles are reversed. But instead of an adult caring and making decisions for a child, this new dynamic has a younger adult caring for an older adult — and one who is used to being independent and making his or her own decisions.
This type of caregiving may begin after a major event, such as a parent falling, being diagnosed with a chronic illness or having major surgery, or it can happen gradually due to a parent's declining health or increasing lapses of memory. This is when — out of necessity — many must consider whether they need to become more involved in their parents' daily lives and health care, or if they can take on the role of becoming their parents' part- or full-time caregiver.
Partnering in your parents' health care decisions
Once you become a caregiver, one of your new responsibilities includes coordinating your parents' health care. It is important to allow your parents to make their own health care decisions if they can do so. Your role is to serve as an informed advisor. While offering advice, try not to pressure your parents into making the decisions you want them to make. When parents are not able to make health care decisions for themselves, you, along with any siblings or a predesignated representative, will have to do so. Who makes these decisions on behalf of your parents can get very complicated if your parents have not designated someone to do so in advance.
Navigating the legal aspects of health care decisions
There are laws in place regarding patient privacy and when one person can make a health care decision for someone else. Here are some tips and the legal documents needed to help you and your family navigate this aspect of your journey as a caregiver.
Talk about your parents' health care wishes now
Because we can't predict when or if our health may decline, it is important for your entire family to discuss everyone's wishes regarding health care.
The sooner you have these conversations the better, especially with your parents. Discuss your parents' wishes should they not be able to make their own health care decisions. This is recommended for everyone, not just older adults. Remember to communicate your own wishes for your health care in the event you are unable to make your own decisions. Encourage your spouse or partner, your siblings, and anyone else you care about to do the same, regardless of age.
Gather your parents' medical information
Just in case you need to access it now or in the future, keep lists of the following items together in a file, folder or binder:
- Advanced directives
- Appointments
- Diagnosed medical conditions
- Health care providers
- Medical and dental insurance
- Medical history
- Medical records
- Medication allergies
- Medications
- Notes from office visits
- Pharmacies
Tips:
- Make sure to periodically update this information. Also, make sure to let someone else know where this information is kept.
- While you are gathering this information for your parents, it's the perfect time to gather your own information, just in case an emergency happens and someone needs to act on your behalf.
Get your parents' health care wishes in writing
Because there are legal restrictions around discussing someone else's health care with medical personnel, as well as making decisions for them, encourage adult members of your family to put their wishes in writing by completing advance directives, and making their wishes known to either someone in the family or the person they plan to designate as their personal health care representative.
These documents allow individuals to explain their wishes for care in case they are unable to do so, designate a health care representative to make decisions for them, and provide instructions for the physicians in charge of their care. Advance directives do not affect access to care, treatment or services.
Advance directives checklist
There are three types of legal documents included in advance directives:
- Directive to physicians (living will)
- Medical power of attorney
- Out-of-hospital do-not-resuscitate order (DNR)
To learn more about each document or to download the Directive to Physicians, Family or Surrogates and the Medical Power of Attorney forms, visit Houston Methodist's advance directives webpage.
How to request your loved one's medical records and information from a doctor
To obtain a copy of someone else's medical records at Houston Methodist when you are not the patient, you must download the Authorization for Use and Disclosure of Health Information form and mail, fax or email it to the Houston Methodist facility where services were rendered. The form must be filled out by the patient, or the patient's guardian or legal representative.
Because of the Health Insurance Portability and Accountability Act (HIPAA), if you are not your parent's guardian or legal representative, you will need your parent or your parent's guardian or legal representative to sign a medical release form authorizing you as someone with whom the doctor's office can share patient information. This form is usually included in the packet of new patient forms at the doctor's office.
Self-care for the caregiver
Caregiving for your parents involves so much more than managing their health care needs. While it is a privilege and rewarding to be able to reciprocate the care our parents once gave us as children, it is also a huge responsibility. Caregiving for a parent can be very frustrating and stressful, especially when combined with life's other obligations, such as marriage, raising children and work. Unfortunately, it is not uncommon for caregivers to suffer from burnout, stress and depression. For this reason, it is vital that caregivers:
Seek support. Consider joining an in-person or online support group for caregivers. There are support groups for caregivers caring for patients with specific illnesses, such as the support group at Houston Methodist Clear Lake for Alzheimer's and dementia caregivers.
Practice self-care. Self-care isn't selfish. You must take care of yourself in order to care for others. Take a course, such as the Powerful Tools for Caregivers®, an educational program offered at Houston Methodist Sugar Land Hospital to help family and friends caring for adults with long-term health conditions.
Here are some other self-care tips to help guide you through the caregiving journey:
- Ask for help. And allow yourself to accept help.
- Share responsibilities with siblings or other family members.
- Hire someone to help care for your parents if you can.
- Change negative self-talk. You are only human and can only do the best you can.
- Communicate your needs and feelings in a constructive way.
- Identify and reduce personal stress.
- Exercise. It is a great way to boost your mental health.
- Focus only on changes you can make.