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.

The Not Quite Empty Nest When You Have a Young Adult With Special Needs

I haven’t posted in a while because, as I’ve written before, summer sucks about everything out of me. Caleb has had a great summer and is excited for school to start. So am I.

This week lots of my friends are posting about their oldest kid leaving for college. It’s a challenge for all parents. The little person you’ve known from birth is now flying off on their own, just as they should be, just as you raised them to do. It’s a phenomenal achievement for both kids and parents, but for parents it leaves a hole in the house. I often say about Sophie that when she leaves, she takes all the air and sunshine with her.

Sophie is a junior now and I should be used to her leaving, but when she left this week with her car heavy with almost everything she owns, I collapsed into a mess of tears. Sophie is smart, incisive, a great helper and one of the funniest people I’ve ever known. I miss everything about her.

Here’s where the not quite empty nest kicks in. For most of us parents with special needs kiddos, our kids will never leave the nest. I’ve talked with many older families over the years and in most of those cases, their special needs adult lives at home until a grave illness or death strikes one or more of the parents.

My goal is to let Caleb live with me for as long as he can. All the things I do to give him a happy life take a great toll on me, but I fully believe he deserves a happy life because he has been through so much. Life is incredibly challenging for him and it’s my duty to make his home life amazing. Plus, he’s a great and funny kid too.

Years ago, when Sophie and I first started talking about college, I realized that her leaving would hit me like an icy wind, reminding me that all is not normal in our family. As difficult as it is to say goodbye to your precious 18 year-old, when you have a dependent kid, it is a painful reminder that one will leave, but the other one never will.

It took me until Caleb was about four years old to fully understand just how challenging the world is for him. At any given time, he has at least 10 specialists who work to keep him healthy. Every visit with these wonderful providers serves to remind me that Caleb is not healthy. It took many more years to realize that Caleb would live with me forever.

As a parent, you work with your neurotypical child, helping to learn their letters, to complete mud replicas of Aztec villages, to practice whatever language they have chosen to study. You help them learn to swim and shuttle them all over the place for sports or music or debate clubs. All of these things, you hope, will prepare them for college. That’s the goal. It’s a natural expectation that your child will one day leave home and use all those skills to become a successful adult.

When your child has special needs, it’s a major upset to that expectation. Aside from missing Sophie, her leaving is also a stark reminder that the natural order has been disrupted. There are upsides to an empty nest, but we won’t experience them.

So, my fellow parents with a not quite empty nest, here’s what we need to do. First of all, it is vitally important that we grieve the loss of a normal transition to adulthood for our kids. You may not even realize that in the way-back of your mind you were still hoping your child might be able to be independent. For many people reading this, that is a reachable goal and I’m so, so happy for you. But for all the parents of amazing kids like Caleb, you have to acknowledge the grief so you can work through it.

I didn’t cry for so many years because I knew if I started, I wouldn’t be able to stop. We need to cry. That grief needs to come out or it will become toxic. As Sophie will tell you, now I cry at almost anything. Songs on the car radio. Commercials. Amazing performances on So You Think You Can Dance. I will tell you that being a crier is so much healthier than holding it all in.

The second thing we need to do is seek out day programs for our kids to attend when high school ends. Caleb has three more years and I’ve already started investigating. If I had the energy, I would write congress and lobby for them to provide extended schooling for our kids, which would be much cheaper than government-funded group homes. My energy stores are bankrupt right now, so I won’t be doing that.

The third thing we need to do is find something that we love to do. This one is really challenging for me because, at least during summer, we are stuck in the house all day because of the heat. So when Caleb wants time to himself, I read, watch tons of HGTV, play Fleetwood Mac on Pandora while I’m cooking. I burn candles after dinner because they just make me happy.

I’ve also found adult coloring books with stress-relieving patterns (there are lots to choose from on Amazon). Caleb and I color together while I play Lindsey Stirling on Pandora. It’s the ultimate in parallel play for him and it’s a great bonding activity for us.

We need to nourish our souls with joyful things so they don’t atrophy. Caregiving is enormously stressful and we need to replenish ourselves. If this sounds selfish to you, then consider it as strengthening your entire self so you are better able to take care of your child with special needs.

I know this will cause lots of eye-rolling but we need to eat healthy and exercise to keep ourselves healthy so we can live long and take care of our kids. I know this isn’t always realistic—so often, I feed Caleb his breakfast, give him his meds for the day and then have to rush out the door with only coffee for me. Just do your best. It’s better than not trying.

We also need to reach out. I don’t accept help easily, like so many parents. When I reach out, it’s to God in prayer. I find saying the Rosary enormously comforting. Sometimes all I can do is chant, “Help me. Help me.” I was doing this yesterday while driving with Caleb. I was in tears and trying to hide them because they upset him. We came upon an empty playground, got out and played for a few minutes. When we left, I was laughing. I got the help I prayed for.

I am not a model of all that I advise. I fall short all the time. I collapse a lot. I am extremely fortunate to have a large network of other moms of kids with special needs. We talk on the phone. A lot.

I wish every parent with a not-quite empty nest the best of luck in this painful transition. I wish that even if you can’t follow all of the advice above, that you try at least one. I wish we could have a worldwide virtual coffee date. I am open to other suggestions of how to cope with this stressful time. We need to lean on each other and learn from each other. That’s why my blog is called Neverland Without a GPS—we are in unchartered territory with no clue how to navigate it. But we’re here together.

helping hands