A story of Self Advocacy

A couple of months ago I wrote about my husband’s mother, Marie, who had to move to Maine from Arizona when her husband/caregiver passed away unexpectedly. I’d like to continue the story because I think it helps to hear how others solve problems. And if it motivates anyone to ask for more than just what’s prescribed in their care setting, then my story is worth writing.

Fortunately, my husband and I have been able to incorporate Marie’s needs into our lifestyle and things are going pretty well. Because she has sufficient resources in the way of income and long-term care and health insurance, there are no financial issues. But there have been many significant health care issues, which run the course from where do we find Tucks to “hospice or no hospice.”

Marie came to Maine and enrolled in hospice, having no diagnosis other than failure to thrive. She also had a condition that required fluid to be removed from her stomach regularly.

Little did we know that because she was in hospice, she couldn’t be admitted to the hospital for that procedure, as it was not associated with her “diagnosis.” So, shortly after coming to Maine she had to withdraw from hospice in order to be admitted to the hospital for the procedure.

On an average of every ten days, Marie had to go through the hospital emergency room process in order to be admitted. She had to be transported by ambulance because she is bedridden in a second floor room. Routinely, EMTs had to pick up and return Marie after her stay the hospital. This went on for many visits. Marie was getting tired.

She continually asked me if we could just get someone to come to her room to do the procedure. I, of course, answered no. “There is no way anyone could do this in your room,” I explained.

“There are very few doctors who even make house calls, never mind perform hospital level procedures in a home.”

I even went so far as to ask the assessing nurse to set Marie straight once and for all and to inform her in no uncertain terms that she could either continue living in her current setting and have the ambulance staff carrying her up and down the stairs every 10 days, or she could consider a nursing facility because there was never going to be a doctor that would come to her room and do that procedure!

Sometimes being too sure of yourself doesn’t pay off.

One day a doctor from the hospital called and told me that if Marie were to rejoin hospice, he would be willing to come to her apartment and do the procedure on a volunteer basis! She had suggested it to him and, he, after considering it and double checking with his insurer, agreed to do it. He had the equipment shipped to her home. Now he comes, sometimes after work and sometimes before work, every 7-8 days.

This has been such a gift to our family I cannot even describe how grateful we feel. And I have learned to never say never.

The set-up is a gift to Marie as well. Her anxiety and stress levels have been significantly reduced and she has a newfound confidence in healthcare providers. And best of all, she and the rest of the family has been given back some hope, which is invaluable. Marie’s new relationship with her doctor has educated all of us on the value of asking for what you need, even in the face of naysayers. Being vocal may not always work, but it is worth a try and you never know.

Now, we don’t know if this doctor is the forerunner of new concepts in physician care or if he is just an angel. But the lesson in all this is, thinking about what would work best for you and then letting your healthcare professionals know, can reap its own rewards.

I would venture to say that there are probably more doctors like this than we know about, but they won’t help you if you don’t ask. And who knows, the person you talk to may just be the one to make it happen.

If there is something you don’t understand about your care or your family member’s care, be sure to ask the people who are working with you. If you are a stressed family member and cannot get a straight answer from anyone, contact Eastern Agency on Aging and our Family Caregiver Program.

I know it has helped us to be able to share stories and learn about the options that my husband and I needed to consider for his mother.

If you have a story like this, we would love to hear from you and have the ability to share it with many.