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Spinal Cord Injury Paralysis Resource Center

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When Your Caregiver Needs Therapy

Saralee and Bob

 

Bob and Saralee

By Saralee Perel

I promise that my husband, Bob, not only gave me the okay to tell everybody he's in therapy; he suggested I write this column. For 2 reasons:

  1. He feels nobody should be ashamed of seeing a therapist.
  2. I'm acting deranged.

Nearly all caregivers are under a lot of stress. Of course this time of year, stress gets magnified with all of the to-do's that go along with the holidays. But essentially, Bob is going to therapy because he's having a hard time living with the huge changes in our lives since my spinal cord injury.

I vowed I'd never in a million years ask him what he talks about. Here's how it went after his first session.

Me: "What did you talk about?"

He left the room. I grabbed my cane and followed.

"I swear I'm okay about you going to therapy," I lied.

"You're threatened to death."

"I'm not! Unless you talk about me. You don't, right?"

He kept walking away. I found him in the kitchen. He was looking through the cabinets searching for the bag of red and green M & M's that he always puts on top of his homemade Christmas cookies. He gave me an accusatory stare.

"I know what you're thinking, Bob. I swear I didn't eat them." I feigned compassion. "With you going to therapy and all, you probably ate them during a psychotic break and don't remember."

He opened the cabinet under the sink where we keep all the cleaning supplies and pulled out an unopened bag of the M & M's.

Now I was questioning my own mental health. I knew I already ate the whole bag. "Um, sweetheart," I said. "I'm . . . um . . . ."

"Knowing you'd swipe the bag in the cabinet, I bought two. I kept one under the sink because you never clean anything so there was no way you'd find it."

"I can't clean! I can hardly walk and you know I have no balance."

"If you're going to blame one more thing on your SCI, I'll remind you that you've been unbalanced way before it happened."

I got right off that subject and back onto therapy. "You didn't talk to your doctor about sex, did you? That's all every therapist wants to hear about. They're all perverts. That's why they go into the profession in the first place – to hear everybody's dirty stories." I shook my head in disgust. "Can you imagine getting paid to be a sitting peeping Tom?"

He scratched his head and said (sarcastically I think), "Gee. Didn't you have your own therapy practice for 22 years?"

"Yes. That's why I'm an expert at recognizing when people change subjects." I took out a pad and pen. "Let's get back to discussing what you talked about."

"I wasn't talking about that."

I hobbled over to my purse and pulled out a sealed envelope. "Don't read this," I said. "Just give it to your doctor. It's a Christmas card."

He tore open the envelope and read aloud, "No matter what Bob says, I've never pointed out that I can barely walk and he can. I've handled my disability with the courage of Mother Teresa. I have never expressed self-pity in the form of singing all day long, ‘Nobody knows the troubles I've seen,' and I do not hum it loudly, heavily sighing between words, while he's sleeping. PS. I didn't start whatever fight he talked about."

He tore up the letter.

"Bob, I just want to know one thing."

"There's never one thing."

"Does he want me to come with you to therapy?"

"I have no idea."

"Oh no, Bob! He does?" I felt faint.

"I didn't say that."

"I bet he does. I don't want to go," I said. "I'm not mental. You are."

"What makes you say that?"

"Because YOU are the one seeing a shrink!"

He sat with me on the couch and held my hands in his. "Saralee, I like talking to him. It helps me."

"But you could talk to me for free!"

"No offense, but you're a lunatic."

"Oh, if I had a nickel for every time I've heard that. Just try talking to me. I promise on my mother's eyes I'll be objective."

"Your mother's dead."

"Give me one chance," I pleaded.

He sighed, still holding my hands, "Okay. Pretend you're my therapist." I nodded. He said, "Sometimes it's hard being a caregiver."

"You, you, you. Why don't you put yourself in her shoes for a change? Oh that's right. She can barely walk in her shoes."

He got up and went to the front office muttering, "I'm not discussing this anymore."

Before his first session, I saw him stick a ballpoint pen inside his notebook. He brought that along to take notes. I shuffled to his office and hugged him. I kept my arms around him for a lovingly long time while I gingerly felt his back pockets trying to find his notebook. He softly kissed me and whispered, "It's in my locked desk drawer."

Saralee and Bob

Bob and Saralee

Later, after supper I said, "Sweets, please forgive me for how I'm acting."

"On one condition," he said.

"Anything. You name it."

"You'll never bring up therapy again."

"Got an alternate condition?"

"Nope."

Caregivers need as much care as the people who are depending on them. If our caregiver wants help, it will actually be better for us too.

If we're threatened, that's natural. Of course we're worried about what someone who is close to us is saying about us. But we can help ourselves deal with our fears in a healthy way. Here's how:

  1. Remember that a good therapist will actually help improve our situation.
  2. Amazon is selling a ballpoint pen that has an 4 gigabyte digital voice recorder inside of it that will make a perfect Christmas present.

A Reeve Foundation Fact Sheet on Caregivers PCAs Respite (PDF)

A Reeve Foundation Fact Sheet on Mindfullness (PDF)

A Reeve Foundation Fact Sheet on New Injury Top 10 Questions (PDF)

A Reeve Foundation Fact Sheet on Umbilical Cord Blood Banking (PDF)

CaringRoad.comCaringRoad.com is dedicated to helping family caregivers obtain information, locate services and find support so they can make informed decisions about the care of their loved ones. An online community of family caregivers.

Center for Research on Women with Disabilities (CROWD)Dept of Physical Medicine and Rehab Services at Baylor College of Medicine.

Caregiver.comOffers a directory of support groups for caregivers.

The Caregiver InitiativeA project of the Johnson & Johnson Consumer Products Company to help family caregivers provide care to their loved ones and reduce their own stress. Includes information on caregiver needs, and training materials for family caregivers.

Family Caregiver AllianceCaregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.

Family Caregiving: It's Not All Up to YouNFCA and the National Alliance for Caregiving launched a public education campaign to give information and support to caregivers.

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

Mobile WomenArticles, resources, online forum for women with disabilities especially wheelchair users.

National Family Caregiver Association (NFCA)The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.

National Alliance for CaregivingThe Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family care giving issues, work to strengthen state and local care giving coalitions, and represent the US care giving community internationally.

Red Cross Family Caregiving ResourcesInformation for caregivers.

Spinal Cord Injury CaregiversYahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.

Well Spouse AssociationA national, not for profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Through information and support groups, the organization address issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

The information provided in the Paralysis Resource Center was supported by Cooperative Agreement number 1U59DD000838-01 from the Centers for Disease Control and Prevention (CDC). Its contents are solely the responsibility of the Reeve Foundation and do not necessarily represent the official views of the CDC.