Be the Voice for your Loved-One

You are the advocate

As a caregiver you may provide your loved-one personal care such as feeding, bathing, cleaning, transportation, and exercise.  You also may have medical, financial, and legal responsibilities.  You may even organize social and recreational activities.  Keeping up with a loved-one’s many needs is challenging.  Making sure other people are doing their part can be maddening!

Be respectful and write it down

Whether caring for a child or adult, someone with communication challenges or someone who is completely coherent, our process for establishing a loved-one’s needs starts with some basic questions:

• What is most important for their enjoyment of life?
• What decisions do they want to make for themselves?
• What frustrates them or upsets them the most when having to rely on someone to care for them?
• What worries them and what can you do to help?
• How do they want you to advocate for them?

These are open-ended questions that may end up covering many topics.  Be respectful of your loved-one and write down all their responses.  You will find that this will help both of you in making sure you are clear on what your loved-one’s needs are and how you can help.

Communicate the care plan

Now the task is to translate your loved-one’s needs into their care plan and then communicate it to the rest of the care team.  You may use a marker board, flip charts, emails, or apps.  My favorite format is a laminated, double-sided, 8.5”x11” care sheet complete with medical information, preferred meals, routines, recreational activities, and key contacts.  I made sure every member of the care team had the latest copy and a copy was always with my loved-one.  My Dad’s care sheet included the minimum number of glasses of water per day.  My child’s included her favorite books and snacks.

Speak up for your loved-one

Anytime I had a conversation with a physician, therapist, teacher, or program director, I always asked them if they had any questions about the care plan. At times they had very helpful suggestions and updates. Other times I had to speak up and be clear that we needed to follow the plan. If any changes needed to be made, I always discussed it with my loved-one before we made them.

Some legal stuff

In the last article I mentioned the need for a caregiver to establish a Medical Power of Attorney (MPOA), also referred to as a Health Care Power of Attorney.  This is used to establish your rights to make medical decisions on behalf of your loved-one.  Two additional legal medical instruments for senior adults are the Advanced Directive (AD) and the Living Will. You will want to file a copy of your loved-one’s AD anytime that person is admitted to a care facility (file it during admission).  You will also want to have one with you when you travel. The MPOA combined with the AD will give you substantial legal authority to advocate for your loved-one during a healthcare emergency.  The Living Will has some legal characteristics similar to an AD. You and your loved-one should consulate an attorney or healthcare advocate in your state to determine which is best suited for your needs.

If you help manage your loved-one’s finances, you may need a Durable Power of Attorney or a Springing Power of Attorney. Both allow you to act on behalf of your loved-one, should they be unable to make decisions for themselves. As with the AD and Living Will, consult with an attorney in your state to determine which is best for your needs.

Hugs help advocates

My last piece of advice on being an advocate are hugs help. Get in the habit of hugging your loved-one after a conversation and hug others too. I have found that hugs are contagious and help connect the care team in a way few other gestures can. You will feel better and the entire care team will too.

Marc Mar-Yohana is Founder & CEO of OtisHealth, a free application designed to help caregivers manage their loved-one’s health, by guiding the creation of a full health record. Caregivers can upload or retrieve any medical record, add your own records, log daily vitals, and share information with healthcare providers, placing critical health information at your fingertips.