Special Needs Parents: Why Taking Care of Yourself Should Be a Priority (Hint: The Statistics Are Scary!)

Hanging on the edge of the chair, suffering from a hangover I’ve seen it with my mother; she’s been caring diligently for my grandmother since she suffered a stroke in 2008.

I’ve seen it in the waiting room of Andrew’s physical therapist’s office, on Facebook posts, in the grocery store aisles.

Lately, I’ve seen an awful lot of it each time I have the misfortune of finding myself in front of a mirror. It’s a look that says, “I’m freaking exhausted, and there’s nothing I can do about it.”

Caring for someone else – someone who requires we go above and beyond standard-operating procedures such as the elderly, the sick, or those with special needs – means that there’s usually a visible veil of fatigue that surrounds us everywhere we go.

While it’s not surprising that taking care of another human being who is unable to fend for him or herself is both physically rigorous and emotionally draining, it may shock you to learn just how detrimental it can be to your health.

Consider, if you will, some of these somewhat startling statistics:

• More than 65 million people, 29 percent of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one. – National Alliance for Caregiving in collaboration with AARP, 2009

• 14 percent of family caregivers care for a special needs child with an estimated 16.8 million caring for special needs children under 18 years old. 55% of these caregivers are caring for their own children. – National Alliance for Caregiving in collaboration with AARP, 2009

• 72 percent of caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves. 63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise habits than before caregiving responsibilities. – Evercare Study of Caregivers in Decline: A Close-Up Look at Health Risks of Caring for a Loved One; National Alliance for Caregiving and Evercare. 2006

• Caregivers who are often under extreme stress have been shown to age faster than their counterparts of the same age. This level of stress can take as much as 10 years off a family caregiver’s life. – Elissa S. Epel, Dept of Psychiatry, Univ of Calif, SF, et al,
From the Proceedings of the National Academy of Sciences, Dec 7, 2004, Vol 101, No. 49

• Studies have found that 36 percent of women caregivers handle the most difficult caregiving tasks (i.e., bathing, toileting and dressing), when compared with 24 percent for their male counterparts, who are more likely to help with finances, arranging care, and other less burdensome tasks. – Family Caregiver Alliance, National Center on Caregiving

• 40 to 70 percent of family caregivers have clinically significant symptoms of depression with about a quarter to half of these caregivers meeting the diagnostic criteria for major depression – Family Caregiver Alliance, National Center on Caregiving

I’m not trying to freak you out here; I mean, I’ve completely freaked myself out, but that doesn’t take much these days. What I am trying to do is motivate all of us to start taking better care of ourselves and get proactive about our health – before we end up needing a caregiver too.

I know I need to eat better, get more sleep, and schedule some one-on-one time with my doctor. I also know that if I don’t make a total commitment to taking better care of myself, I won’t be able to provide my special needs son, Andrew, with the kind of support he needs and deserves.

It’s just that simple, right? So why does it feel so impossible to do?

For me, it can often be a lack of willpower. If I’m truly honest with myself, I can easily fit in a 30-minute workout each day and do a healthy meal prep the night before. But when push comes to shove, I’d much rather unwind with a bag of white cheddar cheese popcorn from Trader Joe’s and catch up on Law and Order: SVU episodes. That sounds infinitely better than a brisk walk around the neighborhood and a baggie of carrot sticks, doesn’t it?

Those statistics scare me though, and if I’m going to be in tip-top mental shape to take on those grueling IEP’s and physically strong enough to assist my special needs son Andrew in whatever capacity he may need down the road, I have to be willing to put that bag of popcorn down and stop using simple carbs as a means of dealing with the total mind/body burnout that comes over me at the end of each day.

I will say this: the smartest thing I’ve done to take care of myself been to secure a weekly appointment with a woman who is trained to listen to people like me. I have a standing appointment each Friday afternoon to sit on her couch and fall apart while she figures out how to put me back together again. Some sessions are harder than others, and some leave me feeling like I can overcome anything, but both are necessary to my well-being as a parent of a special needs child who requires the kind of care and vigilance that can leave me breathless.

Start small.

I know it’s hard. Find 10 minutes each day to decompress somehow. It can be a hot cup of tea, curling up with a book, starting a journal, deep-breathing exercises, or a hot bath by candlelight when everyone in the house is fast asleep (that last one’s a joke because of course no one is ever asleep at the same time! I just wanted to make sure you were paying attention!).

Social media makes it easier now than ever to connect with like-minded folks who are well-versed in the demands of being a caregiver. Find time to virtually meet with people who wear the same shoes as you for a few minutes each day, and watch as your feelings of hopelessness and isolation turn into a sense of community and support. I rely heavily on my incredible network of special needs parents who don’t judge me when I start speaking in tongues as a result of my everyday stress. They are my herd and I love them.

We have to make ourselves a priority, or we are doomed to reap the consequences. It may feel like a luxury and you may feel pangs of guilt at first, but it can mean the difference between a healthy vibrant you and someone who vaguely resembles the person you once were.

Our loved ones depend on us, and are counting on us to do right by them. This includes creating an environment that fosters our own vitality, both inside and out.

By making a commitment to take better care of ourselves, we avoid the risk of mental burnout and physical injury – and as caregivers to those in our lives who rely on our strength and compassion, it’s a risk we just can’t afford to take.

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Comments

  1. Man, has this article struck a nerve with me. I AM nothing more than a shadow of who I was before I had Jack. I truly TRULY hate myself. Does that mean I’m homicidal or suicidal? No. Far from it! I’m so ashamed that I don’t have more willpower. But every time I turn around, Jack is collecting another diagnosis! This time, it’s ‘a duplication on the long portion of Chromosome 4′—a genetic anomoly that has never been documented in the history of the world. Hooray . . . Can we just go a year without some new MAJOR diagnosis? After SEVEN YEARS, is that too much to ask?!
    I’m tired. So tired. And the only cure for the despair that I’m experiencing is SLEEP! So I’m going to do that until Jack’s sleep medications wear off at around 2:30 am. Because that’s my life. But THANK YOU for writing advice that I really need to start applying. For my sake, my husband’s sake, my son’s sake, and the sake of my marriage.

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