by Kate Welch
Anxiety and depression can quickly siphon the strength of the strongest person. Caring for a loved one who suffers from the crippling effects these disorders can be debilitating for the caregiver. If your loved one also has special needs, like my son, these challenges are magnified and may render you limited in any help you can provide.
As a caregiver, the inordinate stress of caring for someone with many needs makes you vulnerable to your own set of anxiety and depression. When you are the sole caregiver, it is imperative to be a steadying force to help your loved one navigate frightening emotions. And unfortunately, like most, I completely fail in this regard most of the time.
My son Caleb is 20-years-old with a primary diagnosis of 22Q Deletion Syndrome and a related diagnosis of autism. He tests cognitively around age three to five which significantly complicates the level of care he requires. It’s difficult to look at a six-foot tall young man and remember that inside he is truly a tiny child who hasn’t developed the coping skills one would expect of a young adult.
Caleb has struggled with anxiety for two decades. Anxiety disorders run in both sides of our family so he was already predisposed to them, but our family life situation helped to create a constant state of anxiety for Caleb, his sister and me. I was in an abusive marriage with his father until I left when he was 16. There was no adequate way to explain the concept of divorce to him, so Caleb now thinks whenever any situation isn’t working that a divorce, of any kind, is coming his way, which raises his anxiety level.
Prior to the divorce, Caleb’s anxiety over his father’s verbal attacks on me became anxiety over anticipated abandonment. When these attacks would begin, Caleb’s older sister Sophie would come find him and the two of them would hide in a closet together until my ex-husband stopped screaming. When Sophie went to college, even though Caleb and I lived on our own by then, he lost his beloved protector and his anxiety level climbed because he felt so vulnerable without her. I now take Caleb to a wonderful male therapist twice a month but it has taken him four years to try to process the horror of divorce and a splintered family.
Before Caleb was born, I already struggled with significant anxiety and depression of my own. Caring for him has accelerated my own conditions, and I now tend to fall quickly into the pit of depression and episodes of crippling anxiety. Ten years ago, when Caleb was in a body cast recovering from a broken femur, the inordinate stress of his care caused me such anxiety that I went blind for 90 minutes on two occasions. It still happens occasionally but thankfully for no more than 10 minutes at a time now. A few years ago a very intense panic attack sent me to the ER and the hospital kept me overnight.
Medications don’t help me, but they are the only option for Caleb because he lacks the communication skills to be talked out of his anxiety. When something frightens him, he will ask me questions about it, about every 60 seconds, until it has passed. His doctors and I are very careful to be sure he’s not overmedicated, but his dosages are higher than I would like because anxiety can otherwise pilfer good days from him.
We’ve tried using picture-exchange cards with some success and his therapist has taught us some creative communication skills. Both of these coping mechanisms are limited in approach, so when something new pops up that causes Caleb anxiety, it’s like I’m learning a new language. Delays in coping create more anxiety for both of us.
I try to remind myself that beyond the tiny piece missing piece of Caleb’s 22nd chromosome and the autism and mental retardation that he is in some ways a typical 20 year-old young man. He has no interest in talking about feelings with his mom. He isn’t interested in breathing techniques or yoga. Unlike neurotypical 20 year-olds, though, when Caleb is extremely upset he hits himself in the face with such strength that he draws blood. He screams and retreats. It’s very difficult to find a balance and for me to know how to help him.
Caleb and I are connected in a way that transcends most parent/child relationships. Because his verbal communication is so limited, I am his voice. I know what he’s thinking at almost any time, from nonverbal cues and from spending all of my time with him. I’ve been told that my aura merges with his when he needs help. Consequently, I can sense when a situation arises that will cause him undue anxiety, which raises my own anxiety, which Caleb feels and then reacts to. It’s the worst kind of cycle and it leaves us both exhausted.
Along with depression and anxiety, being the caregiver of a young adult with special needs often leads to isolation and confinement, which causes another level of depression. Caleb is charming and funny, but all social situations exhaust him to varying degrees. Disruption of routine causes a full-body meltdown. We live in a part of the country that rarely sees snow, but when it happens, the entire county shuts down for days, interrupting routine, school and activities that Caleb enjoys. Over the past four days he has said, “I hate snow. Snow go home” on repeat for all of his waking hours.
I’m sharing this here so that medical and psychological professionals who care for those with special needs can get a glimpse into why the caregiver maybe didn’t shower or put on clean clothes before an appointment. We may look older than our years. Many of us struggle with sleep disorders.
Research is building on caregiver stress, but we need more. Caregivers are often diagnosed with post-traumatic stress and anxiety disorders. The divorce rate when a couple has a child with special needs is 80%. Whatever we are doing right now isn’t working.
Most of us were not paragons of mental health to begin with. Then the ones whom we love more than life, through no fault of their own, drain away whatever reserves we have left. We can often rally for big events, like surgeries or illnesses, and then we collapse in a mess of our own. It’s not a winning situation.
Raising and loving a child with special needs is already a situation rife with challenge. Of the dozens of families whom I have been privileged to meet over the past two decades, most of the parents tell me that they already struggled with both anxiety and depression before their medically fragile child was born. Disappointingly, having a child with special needs doesn’t automatically imbue you with the strength which will be required. If anything, a child with so many needs simply reveals in harsh relief the fissures which already exist in both an individual and a family.
What can caregivers do to strengthen themselves and give their special needs loved one the best platform for a successful life? I really wish there were a simple, one-size-fits-all answer. One thing most families struggle with is finding appropriate, dependable help and assistance. I have no idea how to accomplish this. Respite isn’t a luxury; it’s a necessity for families who are burdened with so many doctor appointments, behavioral challenges, illnesses, injuries, surgeries and the constant stress of atypical days. We need to learn to ask for and receive help, another endeavor in which I constantly fail.
If we are struggling with anxiety, depression or a paralyzing mix of both, we need to get help for ourselves. This help can be medications, rescue medications, therapy and support groups. I can’t overstate how much it helps to be able to talk with those who fully understand. You will find that you all speak the same language and this in itself is relaxing.
Because we are so often “on” for those around us, we need to find somewhere to release all of our own emotions. I keep two lists on Netflix: one of movies that make me cry and one of movies that make me laugh. Some days it’s hard to pick which one I need, but laughter and tears can get so many ugly emotions out refresh our souls.
Every caregiver of someone who suffers from anxiety and depression needs to take care of themselves so that they can provide care without it draining them of the energy they need to provide that level of care. Each caregiver needs to decide exactly what they need to be able to function as a super-caregiver, and then seek out whatever it is they need to be that person.
Our loved ones deserve nothing less.
Kate Welch, author of the blog “Neverland Without a GPS” shares her journey as a proud, single mother of two great children—her 20-year-old daughter who is a microbiology major in her third year of college and her 19-year-old son who has 22Q Deletion Syndrome.
Through her series here, she hopes to reach out to everyone who belongs within the rare community and ben an asset who can spread knowledge and understanding on the topic of caregiving to an adult child.