The Necessity of Respite for Caregivers

crashedcoupleWhile many people with mental health diagnoses are able to self-advocate, some are not. For those people, the burden falls on healthcare providers and caregivers who are already overworked and under compensated for their efforts. We need strong, caring advocates for adults and children like mine, who struggle with mental illness and need adequate mental health related services for all who are in need of them.

Imagine life with a thirteen-year-old who throws daily tantrums like a two-year-old, has periods where he talks (even when alone) every waking moment, and that those waking moments are numerous because he cannot fall or stay asleep.  He endured sexual abuse, witnessed and was the victim of physical abuse, and inherited genetically and was environmentally molded into his own mental illness.

I live this life, along with my husband.  Our son, in our home for nearly three and a half years, is diagnosed with post-traumatic stress disorder (PTSD), oppositional defiant disorder (ODD), attention deficit hyperactive disorder (ADHD), reactive attachment disorder (RAD), traits of Asperger’s Syndrome, and mood disorder NOS (not otherwise specified) {because psychiatrists don’t want to label a child with bipolar disorder, which my child’s biological mother had, which I am convinced that he has}.  Ours was his 13th placement in his 5+ years in DCF custody.

A brilliant child who struggles in school because of his mood instability, he is currently in a substantially separate classroom for children with emotional and behavioral problems.  Along with TAP (Total Achievement Program), this has been a godsend for helping him to learn social skills and appropriate ways to channel his anger toward others.   When other students’ antics cost him his privilege time, or other group members don’t follow the teacher’s rules, his ire comes out.  Have no doubt, he feels completely justified in breaking rules or pulling shenanigans of his own, “but that’s different.”

Last summer, our son (5’6”, 165 pounds) became violently angry and shoved me.  This could have ended in serious injury or death for me as we were at the top of our stairs.  He was admitted the next day to a CBAT (community based acute treatment) facility.  He was discharged after the first few days of school and immediately had trouble at school.  After a few weeks, he became violent at school and was admitted to a different CBAT. The first CBAT would not readmit him, saying he just wasn’t trying to implement his coping skills.  The second CBAT did a much better job ascertaining his issues and treating him.  They also worked to get him a partial hospitalization placement to ease him back into the routine of school work.  He is now almost back to last year’s level of performance when he made honors each term.

Our biggest struggle is respite time for my husband and me to recoup and enjoy being a couple.  We made a conscious decision to bring this child into our home, knowing his past and the struggles we would face (to the degree that it is possible to know before actually experiencing it).  My family is out of state, and my husband’s family members are not well-suited to handle our son’s emotions.  He needs to stay with people who have cared for children with mental and behavioral challenges.  We don’t have a large network of such people from whom to choose.  We have re-established ties with a former foster family whose attempt to adopt our son did not work out, and most months they take him 1-2 nights per month.  In our three and a half years with him, we have had maybe twenty-five nights “off.”  If you are a parent yourself, you can probably relate to needing time alone with your spouse to reconnect.  Now imagine that your child is also suffering from mental illness and the exponential effect that has on your downtime needs.

The Department of Mental Health provided respite for families like ours until fairly recently but at this time cannot help.  DMH also has sponsored camperships for children with mental health issues but I have been told this year that may not be possible due to budget cuts.  I can tell you that my husband and I need our child to go to an appropriate, mental health related, camp equipped to handle him, for the well-being and continued integrity of our family.  Summers are difficult for our son due to having less structured time.  Yet the local DMH director said that not even kids in the DMH caseload (which my son does not fall into because of the blessing/curse that he has MassHealth) may get campership help, much less “non DMH kids.”  We adopted this child from state care and getting appropriate help for him through DMH has been an ongoing nightmare.

Citizens with mental health problems are not a constituency that is able to advocate for themselves.  That burden falls on health care providers and caregivers who are already overworked and undercompensated for their efforts.  We need caring advocates for adults and children like mine who struggle with mental illness and need mental health related services for those who cannot help themselves.

About the author: Holly C. and her husband live on the South Shore with their son, six cats, and a bunny (all adopted).  She works in the health care field in an administrative role.  The blog is from a handout she distributed during the annual Legislative Breakfast on Mental Health on March 12, 2015.

3 Responses to The Necessity of Respite for Caregivers

  1. Leslie says:

    My daughter has mood disorder (bipolar) and we have Mass Health and also get DMH services….You should ask for an evaluation with DMH and look up the youth programming they have that your son can benefit from and advocate for it best you can. Good luck!

  2. Barbara says:

    I’m a single mom of two amazing beautiful adopted special needs sons. We have many of the same issues you mentioned in your post. We are also overcoming domestic violence from their adopted dad, who has mental and physical health problems. Respite has definitely been difficult challenge for us. The two boys need time away from each other as much as I would appreciate some help and rest benefits of some respite solutions. My youngest son who is 11 recently has had 3 hospitizations over the last 6 months. What an ordeal to go thru…crisis teams, police , ambulances, emergency rooms…explanations to school and other care providers….it’s exhausting! But treatment helps…it is a fulltime job…then applying for ssi. Dealing with one beauracracy after another. Dcf says it’s a Dmh issue and vice versa…iccs , revolving therapists, agencies, insurance issues..let alone have a job or a life! But we persevere because we know they’re worth it. And so are we! Keep the faith, keep trying, where there’s a will, there is a way.

  3. carol matzner says:

    You describe the challenges of parenting a child with these needs well. Respite is needed and scarce. A DMH evaluation is a good idea. DCF focus is on keeping kids safe while DMH focus is mental health service. Inter-agency meeting (supervisors from multi agencies) might be helpful. If you do not have a family partner, get one. Family partners improve the quality of life and treatments available. You and your husband are doing amazing work.