Friday, February 3, 2012

A Standard of Care

            My career in caregiving started as a foster parent.  I volunteered take into my home, and to work with a severely disturbed five year-old.  I was supposed to keep her six weeks and teach her to dress herself, feed herself, and use the toilet so it would be easier for her mother to care for her.  That was twenty-nine years ago.  Folks that woman is still under my care part-time.  She had Fetal Alcohol Syndrome that caused permanent brain damage.

            While caring for our foster daughter, I became an advocate for people with disabilities and mental health issues.  I met many other parents caring for children who required twenty-four hour vigilance.  We worked together to help shape the state services into a model that would actually benefit the client.  We made some progress before budget cuts destroyed all our work. 

            Of course while I was working as an advocate for children and young adults, my mother was getting older.  My foster daughter was 20 when my mother became ill.  Now, I was busy caring for her and trying to patch together services for her.  She lived another ten years with a system of services that involved the whole family, her church, the public library, neighbors and some city and county support.

            Finally, after twenty-eight years of care giving, I encountered a standard of care that worked. Mom’s condition became terminal.  I had no idea what hospice was, but I asked for their services anyway.  Hospice sent out a nurse to evaluate our situation.  They sent out appropriate equipment.  Trained professionals came to give mom personal care.  We had knowledgeable professionals on call.  At least twice a week the respite worker came.  I could take a nap or go to the grocery store.  Sometimes she cleaned my kitchen.

            I cannot imagine how much easier my life would have been if that level of service would have been available to me as the foster parent of a disabled child.  I think of my friends whose health failed after years and years of watching a disabled child 24/7.  If my friends had the support they needed, would they still be able to work?  If my friends had the support they needed, would they be able to enjoy their retirement, doing the things they always dreamed of doing?

            I think of my friends who are caring for parents with dementia.  What a relief it would be if they could go to the store or take a nap or even take a shower without worrying about their loved one getting hurt or distressed while they are not paying attention. 

            Support for caregivers is possible.  We see how easily it is done with hospice.  We need the hospice level of support for our families caring for loved ones with dementia.  We need the hospice level of support for our families caring for loved ones with autism, fetal alcohol syndrome, bi-polar disorder, schizophrenia, and any of the many other conditions requiring constant vigilance on the part of the caregiver.

            The dream of appropriate support for caregivers is not impossible.  We have a working model to follow.  We need the decision makers to recognize that support for caregivers is necessary.  We need the decision makers to recognize that appropriate support is the most economical solution for the long term.  We need communities of people who are willing to support each other.  The big question remains, “How do we get there from here?”  I see the goal, but I don’t know how to get there.


  1. I love this idea. From talking to other parents around the country I know that in some states a few programs exist, but in many places there's nothing for a person caring for a child with multiple special needs, especially if those special needs are the "invisible" ones - the mental health, behavioral kind - like FASD (which my son also has). In the state I live in (North Carolina) there are some services, but a family has to be in major crisis and very low-income to qualify...and also seemingly with a bit of luck on their side. Imagine if folks who are caring for very challenging children qualified for respite before things got terrible. Imagine the productivity of those individuals, the consistent environment that could be provided for those children, as well as the positive impact on the caregivers' own mental and physical health.

  2. Stopping by from linked in. Nice post here. My mom was in the same business so I grew up trying to understand the role of dementia and seeing its affect on the family members. But unfortunately I would here some horror stories about how previous caregivers were wretched. But if this service was available that would be very good for those families.