Who is caring for the family?

By Leandra Price

During a recent week of vacation, I was privileged to visit with a family member whose 33-year-old son (“J”) was diagnosed 7 years ago with paranoid schizophrenia.  At the time of my visit, “J” was in crisis and was eventually admitted to an inpatient unit for an extended stay.  As I watched the family dynamics surrounding this situation, I was again reminded of the impact that one mentally ill person has on the rest of the family.  I observed guilt, frustration, blaming, sadness, anger and irritability as siblings and parents tried to figure out a long-range plan of care for this one very ill person whom they all love.

Years ago, when I worked as a hospice nurse, I recall that in caring for a terminally ill person, the “patient” was defined as “the whole family” (extended and biological).  We knew that there was no way to provide good care without incorporating the needs and wishes of the people who had a shared history and who interacted with the ill person on a daily basis. This cooperative model led to better care for the ill person, and I wish it was implemented more often in mental health care.

In the situation I described above, the parents of “J” are dealing with a kind of grief not unlike that of a parent who loses a child to death. The son they knew is gone and a stranger has taken his place.  He makes strange decisions, he does not communicate well, he changes from one living situation to another, he is sometimes angry and is often irrational and what they are left with is a constant ache and concern about his welfare. When he is hospitalized the family usually cannot converse with the care team and the most they can do is give pertinent information to the providers without receiving any feedback.

Are there any good solutions to this problem?  I truly do understand and appreciate HIPAA regulations and the importance of patient confidentiality.  I know that there are some organizations, such as NAMI, who work hard to support family members, and I realize that some churches also try to fulfill this role.   But when I see families in such emotional pain I want to say to them:

  • This is not your fault!
  • Please don’t let this destroy your family relationships – you need each other.
  • Try to understand that this ill person probably does not want to hurt you.
  • Remember that you – yourself – are valuable and important.
  • Take care of yourself in all ways – physically, emotionally, and spiritually – and don’t ever feel guilty for trying to find your own happiness.

I would like to add “Ask for help when you need it” but I know that stigma and fear often prevent people from asking and receiving help. So I also want to say to society:

“Open your arms to these vulnerable and hurting families. Don’t criticize them – just listen. Try to understand they are living with a kind of pain that may never go away. Give them a break when they need it.  Love them – they need us and we need them.  You may never be in their position, but if you are, you will know how much we all depend on each other. ”

Leandra Price

INMI board member

The opinions expressed in this blog are those of the submitter. They do not necessarily reflect the opinions of the board of directors or members of the Interfaith Network on Mental Illness.