The Power of Others

When I wrote my last blog entry, the quarantine had just begun. For me, it was frightening, but it felt like the kind of frightening you feel when there is a storm coming that will close schools down but not do much enduring damage.

            How quickly that fear wrapped its roots around the world and began to tether us to the earth, like a vine of Kudzu that can consume an entire forest in very short order. We all stepped back, locked our doors and hid away from the world.

            Though quarantine seems to work in most cases to prevent the spread of COVID-19, I have been looking for studies of its other impacts. How many more prescriptions are being written for anxiety, depression and sleep issues? How many people are seeking much-needed mental health support? How many suicides and suicide attempts can be attributed to this ghastly virus?

            If families are able to quarantine together, it can be good or bad. A good family can support each other, play games, share in educational duties and find comfort in company. An abusive or unhealthy family will find their behaviors exacerbated, creating a more dangerous environment than they previously experienced. And for those who live alone, whether by choice or circumstance, loneliness can be deadly. Tensions draw tighter even in the best of circumstances and can cause collapse in the worst.

            Jane Clay of the American Psychological Association states it more eloquently than I in a special report dated June 1, 2020: “…physical distancing is endangering mental health even as it protects physical health.”

            A few weeks ago, feeling a little down and more than a little trapped, I decided to plant a flower garden in honor of someone very dear to me who recently passed away. I bought flats and flats of flowers to plant around my home, so that every window was brightened with happy little flowers, their faces turned with joy toward the sun.

            As usually happens, after one day, one particular Vinca flower was withered and bending over. I’m not a good gardener—I tend to follow the lines of concrete on my patio and I’m happy with that. But this little flower was going to leave a gaping hole between the flowers on either side of it.

            I didn’t want to put my mask back on and trek back to the nursery, so I went to my trash can and drew out a flower I had discarded because it didn’t look healthy. Figuring I had nothing to lose, I carefully pulled it out, dug a little spot next to my sick flower, and nestled them together. Normal spacing for Vinca is six inches, but I was feeling reckless that day.

            This morning, I was watering and feeding my flowers. They always bring a smile to my face. They are a reminder of the beauty that God gives us, and to me they offer a reprieve from how very fast our world has fallen into so many different kinds of devastation and loss.

            When I got to my two sick flowers, I smiled and started looking for my neighbors, hoping to show them this tiny little miracle, but no one was out. I’m smiling as I write this. Those two flowers have grown together. They look like one being, and they look happy. They are in the photo that accompanies this post. I’m still not a gardener, but today I feel like I saved two flowers and I am smiling non-stop.

            As I cleaned up and came back inside, my mind took rainbow tracks to think of the implications of these flowers. The brightest track was one we all know: like the flowers that needed each other, we are social beings. Two sick flowers were able to heal together, while COVID-19 patients are kept in isolation. I fully understand the medical issues, but what direction would our death rates go if patients were allowed to safely see loved ones? What miraculous effect would this have on our front line workers who have seen more death and held more hands of the dying than any one individual should ever be tasked with?

            My boyfriend is the greatest extrovert I’ve ever known. In all of my tests, I’m labeled an extroverted introvert. All of us, no matter what label attempts to define us, fall somewhere along the line and every single one of us need each other. For my boyfriend, he needs to be around friends or family almost all the time. I’m good with being with him and seeing friends and family a few times a week. For others, it could be once a week or less. But we all have the same need. This isolation is hurting everyone, no matter their label.

            Here is where my precious Caleb makes his well-anticipated appearance. Now living in a group home, which has the same classification of a nursing home, I was told in March that if I came to see him, I would have to bring him home with me and he couldn’t return to his home until the virus was over. I miss that young man so much that I debated for half a second, then realized that if I brought him home, it would be awful. For him.

            All of Caleb’s favorite things from our home are now set up in his room at his new home. There is literally nothing here for him. Beyond that, he has three roommates he adores, staff that are now family to both of us and so much opportunity for interaction with others that it would be selfish for me to bring him home to sit on my couch.

            I call Caleb all the time. Every single conversation is happy. He tells me what he’s eating, what funny thing his roommate said, what movie he’s watching. His day program was cancelled during the quarantine and I worried that he would be bored or stressed. But with so much love around him, he seemed blissfully, wonderfully unaware that the world around him had drastically changed. The wonderful staff members have kept consistency and routine running like the best steam train, and that is the most important thing to Caleb and his roommates. They also keep the home so clean and germ-free, following health protocols that would make the CDC proud.

            Caleb has given me more validation that the time was perfect for him to move out of my house and into his new environment. I think of all of the families with a special needs child or adult living with them and how tortuous it must be to find things to do. Even kids with autism, despite what you may have heard, need some interaction. Caleb will watch a movie with his buddies and then retreat to his room to regroup. But any special needs person living with family members will likely feel the strain of not seeing others, and the family members will likely be breaking down from trying to support this very special loved one.

            I’m not endorsing anyone to go out nor have people over to visit until we are cleared by health officials. But maybe, like the flowers, if we can find a way to FaceTime or Zoom or call, it might bridge the gap of loneliness. Connect with old friends. Call family you maybe haven’t spoken to in a while. Write letters to teachers and doctors and nurses who gave you everything they have.

            Caleb has now been allowed to see me two times and he is so happy, but I know not all states are as opened up as ours, and I know ours could close back up in an instant. I’m hopeful we can move past this time in our history, but I also know that where we have been has changed us all. And it might get worse.

            Be kind to yourself. Give yourself a little treat, be it a nap or a candy bar or planting a flower. Find a way to connect with someone. And remember that we are so much stronger when we have at least one person to lean on and grow with. Go find them.

If you find yourself needing help with suicidal thoughts or actions, please contact The American Suicide Lifeline: https://suicidepreventionlifeline.org/

If you need to talk to someone, please consider: https://www.betterhelp.com/

If you want prayer, please consider: https://www.hisradio.com/prayer/prayer-needs/

Whatever you do, please don’t ever, ever think that this world would be better off without you. We need you.

The Side Order of Anxiety and Depression You May Receive When You Are the Caregiver of a Loved One with Anxiety and Depression

 

Anxiety and depression can quickly siphon the strength of the strongest person. Caring for a loved one who suffers from the crippling effects of 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.

Unfortunately 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 and depressive 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 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. Most of us put a brave but fake smile on when we talk to others because if we let a glimpse of our inner turmoil surface we would completely fall apart. 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 and 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.