Family discussing over paperworkWhen I first started caring for my brother, Robert, it was because his health and living situation had deteriorated quickly making it an emergency situation. This is not at all uncommon. Caregiving doesn’t usually slowly sneak up on people: it is thrust upon a family member due to a crisis. 

We not only have to manage the crisis at hand but need to plan for the future. What will the living arrangements look like? Who will be the main caregiver? What does our loved one want or need? 

Important Documents for Family Caregivers

When caregiving starts it is chaotic and extremely time-consuming. However, getting a few documents in place in the beginning will be well worth the extra work and will be helpful throughout your tenure as caregiver.

There are four critical documents to have in place once your caregiving journey begins:

1. Durable Power of Attorney- The Durable Power of Attorney (DPOA) essentially gives the caregiver the keys to the kingdom. As the caregiver, you can make decisions on behalf of your loved one with regards to finances, health and living arrangements. You are able to discuss health issues without violating any HIPAA regulations. Ideally, set up the DPOA before caregiving begins. If that is not possible, then set it up as soon as possible once you have started caring for your loved one. 

Each state has its own DPOA forms. Be sure to have the broad form DPOA, the DPOA for Health Care and a DPOA for Personal Care. There are online services that have these forms for each state but you will need to have the documents notarized and your loved one will need to be able to sign them as well. This is why it is helpful to have them done before caregiving is needed. You can also consult an attorney to get the correct forms completed and notarized. 

2. Representative Payee- The Social Security Administration does not recognize the Durable Power of Attorney (which is maddening when you are first told this). If your loved one is declining and not able to handle their own affairs with the Social Security office, please consider becoming a representative payee. This will allow you to make changes on your loved one’s behalf (such as an address change). Most of these changes can be made either by phone or through the Social Security Administration website once you have been appointed as the Representative Payee. This is a huge time-saver for the busy caregiver! 

Becoming a Representative Payee also gives you the responsibility of managing their benefits. There will be an annual accounting form to explain how the social security benefits were used but it is straight-forward and not complicated. Organization is key as a representative payee. Keeping track of expenses and how your loved one’s money is used throughout the year is essential and will help when completing the annual form. In addition, the form can be completed online which makes it all the easier. 

The process starts by the caregiver (or person wanting to be the Representative Payee) contacting the local Social Security office. The applicant completes a form SSA-11 and then is required to have an in-person interview with your loved one at the local Social Security office.  

3. Advance Directive- This document specifically details the end-of-life wishes of your loved one. The Durable Power of Attorney for Healthcare includes end-of-life wishes but a separate document may be necessary in order to be sure your loved one’s wishes are clear. Each state may have slightly different forms so be sure to use the form for the state in which your loved one lives.

Sometimes doctors are reluctant to have the end-of-life conversation with their patients and the patients’ caregivers. Don’t be afraid to start the conversation! If you or your loved one are uncertain about certain life-saving measures, please ask your doctor. Tell him or her you want to make an informed decision about end-of-life care and are including the instructions in an Advance Directive.

As an example, I was unsure how a ventilator worked and knew that may be something eventually needed for my brother’s care. The doctor and I had a conversation about it and he explained that it is not always a long-term solution and that it could be used for a short period of time (for instance, during a bout of serious pneumonia). 

Ask questions about life-saving measures and then put the wishes of your loved one in an Advance Directive. This document should also be notarized. 

4. One Page Care Summary- This is a document the caregiver creates for their personal reference and can be given to emergency personnel or upon check-in at the hospital. Create the document how it best works for you, the caregiver. Include medications, dosage strength and administration times, diagnoses, emergency contact information, physician information (include the frequently used specialists as well), health insurance information and social security number. 

This Care Summary is critical in stressful situations. No one wants to hunt for various phone numbers and insurance numbers when our loved one is in distress and there is a fire truck, ambulance and several paramedics descending on the house.

One extra tip is to keep the originals of these documents in a file at home and a copy or two either with you or in your caregiver go-bag. You will most likely be asked for the Durable Power of Attorney and Advance Directive if your loved one is hospitalized even if you have previously provided it. The Care Summary will be needed for the paramedics or the emergency room personnel. (You won’t need to present proof of being the Representative Payee when dealing with the medical professionals.)

All four of these documents will take a little bit of work up front but will be time-savers and stress-relievers many times over during your caregiving time. 

About the author

Trish Hughes Kreis is a freelance writer, Legal Administrator and family caregiver for her disabled youngest brother, Robert. Robert has lived with intractable epilepsy his entire life and now lives with Trish and her husband, Richard. Even though Robert needs full-time assistance, he declares everything “excellent.” Robert continues to teach everyone around him how powerful the “magic of excellent” can be. Follow Trish at 365 Caregiving Tips and on her personal blog, RobertsSister.com.