Calling the Doctor

Placing Mother in the nursing home was a wrenching experience.  It was the worst for her; she had to leave her home and she did not go willingly.  It was difficult for us because we had to take her away from the home and land she loved.  What I didn't realize was that in many small ways living in a nursing home, takes away control from the family.

Mother's hand has become more and more contracted.  She now wears a brace, but despite repeated training, the staff seems to unable to get it on correctly.  Nor do they have her wearing it according to the schedule set by the therapist.  Even worse has been the fact that the therapy service provider is not communicating with us despite two meetings where we asked to be notified of changes in Mother's therapy.  After months of trying to work with the therapy provider at the local level, I finally went to the supervisor at the home office.  Now, we have had better communication; however, I have very little confidence that this will last.

Not being able to receive appropriate therapy is difficult, but I am a persistent advocate.  What cuts at me most is the fact that in a nursing home, the family is not truly brought into the loop.  Now Mother needs to have a botox shot in her arm to help release the contraction in her hand.  I want to go to the appointment with her, but I can't call the doctor and make the appointment.  I tried.  I have to tell the social worker when I can go, then she has to make the appointment and call me.

This works for any medical service Mother needs.  When I have a question for her primary care physician, I am supposed to go through the nurse at the home.  I understand that it lets the staff know everything that goes on medically with Mother, but I never dreamed that by placing her in the nursing home we were giving up a level of involvement and control over her care.  If the process worked well at the home, this might not be an issue, but often it does not work.

Mother had a deep cough for days before I finally got the nursing staff to call the doctor.  They would go back to check on her and for the three minutes they were there she wouldn't cough, so they didn't think there was a problem.  I had to insist that she needed to see the doctor, and then it took two rounds of antibiotics to clear up her cough and infection.  I complained to the head nurse.  I got promises.  But what I want is good, consistent care for Mother, and I want to be in the loop.  I want to be informed, and I want to be listened to.

Other families may admit their loved ones and let the staff and home make the decisions. That is fine. We don't work that way.  Mother has to be in a nursing facility, but that doesn't mean we will warehouse her.  We are a part of her life, and we are the watchdogs over her care.  So as frustrating as it is not to be able to call a doctor, I will persist, and I will continue to wedge myself into the process hoping to get the best care for Mother that is possible.