Notes From My Radio Show:The Empowered Patient

On the last friday of the month, I do a radio show,The Empowered Patient. The last show was titled,  The Nursing Home Roller Coaster: Tips for getting Quality Service. My guest was Siri Bani Ludlam, an accomplished artist, mother, teacher and yoga studio owner.

Siri Bani’s story is about her mother who was diagnosed with ALS after being found comatose in her home from a fall.  She remembers very clearly the phone call informing her of the fall and hospitalization.  In a daze, she immediately drove five hours to be with her mother.

After the shock wore off of discovering her mother was still unresponsive, she began to ask questions.  Her tip at this time for people is to reach out to the friends and professionals who you trust for advise.  She realized she needed guidance because she was getting asked  to make decisions by the medical staff.

She realized she had no idea what her mother wanted for end of life care, what her finances looked like and if she had any new medical diagnosis.  She had two aunts who informed her that her mother had been having some problems and seeing doctors.  As it turned out, she had a diagnosis of ALS but refused to believe it.

Her first job was to get healthcare proxy and power attorney.  She encourages families to discuss the issue of healthcare proxy and power of attorney as well as end of life measure including a “Do Not Resuscitate ” order.  Once her mother was out of the coma, she was able to get these papers signed.  She found hiring an elder care lawyer, helped her immensely with all the forms, organizing the finances and assisting with medicaid application and paperwork.

When these pieces were in place, she was able to focus on finding the right nursing home.  Her task was made more difficult because her mother was on ventilation and many nursing homes will not take someone  in this condition.  The hospital gave her a list.  She reviewed the individual ratings, spoke with admissions, visited as many as she could and made a decision.  She felt  the social work staff at the hospital was excellent and supportive and without them would have been lost.  An essential tip when trying to decide on a nursing home is:  No home is perfect and look for the best possible fit.  Make sure the Medicare ratings are three stars or higher.

During this time, she began to feel very stressed and rundown.  She was not taking care of herself.  In order to be a caregiver for her mother, work full time and raise two children as a single mom, she needed to maintain her stress relieving routine of yoga, meditation and exercise.  She started doing yoga in the hallway at the hospital.  When asked what the hospital staff thought, she said when other patients family members joined her, she got no resistance.

Her mother was placed in a home close to her aunts.  By then, Siri Bani was healthcare proxy, power of attorney and had all her mother’s finances in place.  What she learned immediately after her mother’s admission was the quality of care she desired was not a given. She had to be an advocate for the highest quality of care.

She quickly learned to speak directly with the doctor if there was a medical problem.  She didn’t wait for the nurse to contact but the doctor but called his office.

She also hired an aide to be with her mother for safety reasons.  She felt the home, with all good intentions, wasn’t responding quickly to her mother.   It is an out of pocket expense but one she is willing to pay.  The aide will also accompany her mother to the ER if the need arises.

Because her mother has a vent, she is frequently sent to the ER for complications.  She makes sure now, that she checks in with the ER staff about medications and potential changes.  When her mother returns to home, she reviews the medication orders from the ER.  There has been times when on return to the home, recurring medications orders have been missing.

She continues to work with the home to get the care she wants for her mother.  She tells the story of wanting to continue physical therapy .  The home told her, it was stopped because she was not getting better.  Siri Bani told them of course she wasn’t getting better but her mother needed it to maintain muscle tone and people interaction.  Physical therapy was continued.

Siri Bani wanted her mother to have a computer, so she could skype and her mother could watch.  Being on a vent, her mother cannot speak but her cognition is fine.  She got much resistance from the home but overcame each one.  She didn’t let any barrier stop her from putting a computer on a table which faces her mother.  Photo slideshows of the children and grandchildren are sequenced.  The Aide can turn on skype daily.  Family members can talk to her.

The final piece of advise from Siri Bani is, be kind to everyone who you have to deal with.  It doesn’t help to get angry.  Stand your ground with kindness.  And take care of yourself.  If you have an exercise or meditation or yoga practice, maintain it.  It will help through the hardest times.  Also reach out to friends and colleagues for guidance.  You don’t have to be alone.