Showing posts with label caregivers. Show all posts
Showing posts with label caregivers. Show all posts

Sunday, July 20, 2014

What Has Worked for Me



Victoria Tilney McDonough, BrainLine
What Has Worked for Me
Bryan and Cheryl Gasner with baby Emery.
On a recent summer day, Cheryl and Bryan Gansner took their 9-month-old daughter, Emery, to a local park. Cheryl wanted to do a family photo shoot amidst a riot or huge, crazy yellow sunflowers. She took lots of Emery, then some of Bryan and Emery. He clicked a few of Emery and her. Out of nowhere, Bryan snapped. He shouted, “Get me out of here! Now!” That was it. He was done. It was as if a flip had been switched off — or on. He went from calm, quiet, sweet Bryan to angry, impatient, high-adrenaline Bryan.

July 28, 2006

Much has changed for Cheryl Gansner since 2006. She is a new mother, she has a different job working from home, and she knows more about caregiving than she ever imagined.
Cheryl and Bryan have been married for nine years. Their marriage took place between his two deployments in Iraq, in which he worked in field artillery for the Army. “Bryan was always a quiet, kind person. Someone who gravitated to observing and listening rather than being in the middle of things,” says Cheryl. “But he always an active guy, full of energy, always doing something — whether hiking, biking, skiing, or snowboarding or up first thing in the morning cleaning the basement or hauling things down from the attic. And he loved time with his family, and having his buddies over for burgers and beer.”
On July 28, 2006, six weeks before he was scheduled to return home, Bryan was severely injured when the vehicle he was riding in was hit by a bomb blast. His right leg was ripped open by shrapnel, some of the tendons in his knee were severed, and he shattered both his heels. He had hundreds of stitches and has had 16 surgeries. He also sustained a traumatic brain injury and suffers from post-traumatic stress disorder. Cheryl is a social worker, a helper by nature. She spent months by his side dressing his wounds, helping him learn to walk again, and learning to deal with the first stages of healing from TBI and PTSD. After 20 months, Bryan was medically retired from the Army. For Cheryl, the real work began when they got home.
The social and emotional impact from TBI and PTSD is often the most difficult part of living with TBI and PTSD for the injured person and his whole family. “It’s hard for me not to rely on who he used to be before he was injured,” she says, “and not being upset that he’s not that way anymore.”
Bryan is still the quiet, loving, cerebral guy he was before he was injured, but now, according to Cheryl, he is more reserved, more of a loner. “He doesn’t want to go out, he’s less active, he’s more isolating. He can get angry, but mostly, he’s sort of in a ‘blah” state a lot of the time; he doesn’t really get excited about much,” she says. “But things are slowly getting better, and we have strategies we’ve learned that work for us. We’re living our life, and it’s good.”

Tools and strategies

As families with a TBI and PTSD know, recovery is far from quick. But Cheryl and Bryan — with a lot of help from myriad specialists from surgeons to counselors — they have slowly chipped away at the challenges that have come in the wake of Bryan’s injuries. And although life is not perfect — whose is? — they have learned strategies to make their new normal work.
Take the photo-shoot-amongst-the-sunflowers incident, for example. “So, Bryan’s mood can change like that, going from 0-160 mph because of his TBI and PTSD. It doesn’t happen that often, but when it does it comes out of nowhere,” says Cheryl. When they got home from the park, when everyone was more calm, the couple talked about what had happened. Cheryl explained how his snapping at her and making them leave the park before she’d gotten the photographs she’d wanted was hurtful and frustrating. She asked him to try to work on giving her some warning, or to say what he needs in a more gentle manner. She also reassured him that she understood that his behavior was his TBI and PTSD, not him. “So, we both know that next time, things will be a step easier and maybe a handful of steps easier the time after that,” she says.
The couple has also started to return to more of a social life with the strategies they’ve learned and the experiences they’ve had. If they want to go out to dinner, they go on a week night instead of a weekend night, or on a late Sunday afternoon. They make sure Bryan gets a seat with his back to the wall and that the place is not too loud or over-stimulating. This way, they can talk and laugh and enjoy each other without hypervigilance taking over.

Secondary PTSD or caregiver fatigue

When Cheryl talks about hypervigilance or other symptoms like fear of crowds and loud noises, she is not talking only of Bryan but also herself. “I have always been an outgoing, social butterfly by nature, but over time I have sort of taken on some of Bryan’s post-injury qualities or symptoms,” she says. Secondary PTSD or caregiver fatigue, she explains, is quite common. “I have seen lots of other caregivers like me take on their spouse’s symptoms. For instance, if we suddenly find ourselves in a crowd, I start to get panicky because I know that Bryan’s becoming anxious. Or I’ll check exits when we enter a restaurant, things like that.”
As an antidote to caregiver fatigue, Cheryl makes sure she takes time for herself — attending church or going shopping or eating out with friends. “It’s good to laugh and step outside yourself sometimes,” she says.
Through her job with Hearts of Valor, where she has worked for four years, Cheryl has met a network of other caregivers who have become close friends and confidants. They have gone on vacations together, since none of their husbands want to. They turn to each other on tough days, and celebrate together on good days.
Hearts of Valor’s mission is to “honor the service and sacrifice of the people who care for our nation's wounded, ill or injured warriors by providing a community of support based on a foundation of empathy and mutual understanding.” Cheryl helps set up retreats that range from providing education and insight through courses on living with a spouse with TBI and PTSD to equine therapy to a weekend of activities that include journaling or intimacy workshops to cooking classes. “I have found our retreats incredibly healing and rejuvenating — for everyone who attends, including myself,” says Cheryl.
Through Hearts of Valor and in collaboration with other organizations, she also helps set up events and retreats for families. In July, for example, with four other military couples, Bryan and Cheryl went to Six Flags. With special parking and passes that allowed the group to bypass waiting lines and crowds, the weekend was a success. Other couples did the same thing in other amusement parks across the country.

Parenthood

Working as the program coordinator for Hearts of Valor allows Cheryl to work from home so she can balance work with life, including being a new mother, which she loves.
Bryan is sweet with Emery, he like to lie her on his chest so he can talk to her and play with her tiny fingers and toes. “I think it was harder for him when she was in the infant/crying stage,” says Cheryl. “When the crying jags got long, he’d have to remove himself. I understood.”
Cheryl does not leave Emery and Bryan alone because of his short-term memory problems. “A week after her birth, I was starting to put together her baby book. I asked Bryan how he felt during his first week as a father. He said he couldn’t remember. I said, happy? He said, sure, I guess I was happy. I felt pretty heart-broken about that, but that’s the way it is.” She pauses. “He will be a great father. He will bring other things to her life.
“I’ve always been a very positive person. If I’m having a rough time, I will reach out to my caregiving friends since they understand, or call my mom to talk or laugh about something silly.” Then, Cheryl will breathe, look around at all she has to be grateful for and know that the next day will be new and that their family will continue to move forward.
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Friday, April 4, 2014

Should I Stay or Should I Go?


Janet Cromer, RN, MA, LMHC, Brain Injury Journey magazine
There is a critical question many caregivers share only in support groups, therapy sessions, and confidential meetings with clergy. The topic is so complicated and controversial that caregivers hesitate to talk about it in public. That topic is the decision-making process involved in reshaping the relationship with a partner or spouse who has been permanently changed by brain injury. One form the question takes is “Should I stay married or divorce?” Another form is “Should I continue to care for my spouse, or should we live apart?”
As a psychotherapist who facilitated support groups for several years, I heard many caregivers consider how to move on and meet their own needs while living as a “married widow or widower.” Their partners had severe physical, emotional, or cognitive impairments that required intensive care years after the brain injury. Caregivers felt the stress of role and responsibility changes, ongoing grieving, financial pressures, mood disorders, and communication challenges.
Other caregivers explored separation or divorce when a partner’s emotional abuse, substance abuse, or violence endangered their family’s safety. The choices were suffused with years of loneliness, grief, guilt, anger, or anguish for one or both partners.

“Love Him Back to Health”

Ilene has been married to Gary for thirty-four years. In 1995, Gary was in a serious head-on collision that left him with a traumatic brain injury. Their children were seven and ten at the time, and Ilene worked full time in their business. Gary was hospitalized for eleven months, until insurance refused to pay. Like many caregivers, Ilene learned all she could about Gary’s treatment and brought him home. “I was determined to love him back to health,” says Ilene. “It was a dream. Reality did not hit me for many years.” Even with a devoted aide for seven years, Gary’s complex care, safety needs, and incontinence became overwhelming.
The staff at Gary’s adult day health program noticed the toll that caregiving while parenting and working were taking on Ilene’s health. They encouraged her to consider the transition to a nursing home. Ilene admitted Gary into a nearby nursing home and visited daily. She later found a more distant, but highly skilled nursing facility for him. Now she visits weekly. “I’ve tried to regain some normalcy in my life,” she says.

Redefining Love and Support

Ilene says that although she feels like her marriage to Gary ended sixteen years ago, she has never considered divorcing him. “In some ways I consider myself to be separated, not by choice but by circumstance. There is no conversation, no companionship, and no intimacy,” she says. Professionals have not held out hope that her husband can recover those capabilities. “I love him very much anyway, but I have to live my life too. I think I found a good balance for me.”
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Military Caregivers Need More Support, Study Shows




Posted on 04/1/2014 by 
BULLETIN TODAY | CAREGIVINGPrint Print
military caregivers
A mother and a physical therapist work with a veteran
The family members who provide care for the nation’s  wounded veterans of the Iraq and Afghanistan wars need more support than they’re getting, says a study of military caregivers released today by the RAND Corporation. The largest-ever survey of more than 1,000 military caregivers found that 25 percent are soldiers’ parents, many of whom are growing older themselves and who will not always be up to the task.
“These post 9/11 caregivers are providing invaluable support to the veterans they’re caring for,” says Rajeev Ramchand, a behavioral scientist at the RAND Corporation. “If we don’t step up to support them, their health and well-being will deteriorate. If that happens, the care they provide also deteriorates.” If that happens, “veterans risk institutionalization, homelessness, morbidity and early death,” says Ramchand. “Individuals need to plan for their future, but so does society.”
According to RAND research, about 5.5 million informal caregivers care for vets with disabling illnesses and injuries. Nearly 20 percent of them take care of someone who has served since the 9/11 terrorist attacks.
In this latest RAND study Hidden Heroes: America’s Military Caregivers, conducted last summer and fall, vets ranged from age 18 to 55. Forty-six percent of post 9/11 care recipients were ages 18 to 30, 48 percent were age 31 to 55 and six percent were age 56 to 65. Caregivers interviewed included family members (spouses, siblings, parents, children), friends and neighbors; 30 percent were under age 30.
Today’s study, funded by the Elizabeth Dole Foundation, sought to understand the needs of mentally and physically injured or ill vets and their families. The report looked at current policies, programs and initiatives that support veterans, and ways to ensure the well-being of military caregivers now and later.
One reason RAND decided to conduct this research is because of the lack of public or private programs that target military caregivers. Services are more typically devoted to other kinds of caregivers, such as those who take care of people with dementia or cancer. But veterans have different issues, often behavioral health conditions such as depression and PTSD, as well as traumatic brain injury .
Included in the report were these recommendations:
  • Find ways to build military caregivers’ confidence and skills, lessen their stress and educate the public about their value
  • Enlighten health care providers and employers about caregivers’ roles and encourage them to be accommodating
  • Make sure caregivers are eligible for programs and, while they’re at it, expand respite services; typically, military programs are geared to the service member or veteran. Find and create programs and ways that help reduce their caregiving load, provide them health care and offset lost income.
  • Think about the future when parents can no longer take care of their sons and daughters, and anticipate the needs of tomorrow’s military caregivers who may be under siege in a quickly changing political and fiscal climate.

Sally Abrahms covers boomers and aging, focusing on caregiving and housing. She is a contributor to the newly released Not Your Mother’s Retirement. Follow her on Twitter.
http://blog.aarp.org/2014/04/01/military-caregivers-need-much-more-support-rand-study-shows/?utm_source=RSS+Feeds%3A+Aggregate+News+%26+Info&utm_medium=email&utm_campaign=Feed%3A+TBI_News_Information+%28TBI+News+and+Info+-+BrainLine.org%29
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Thursday, March 6, 2014

7 Things You Don't Know About A Special Needs Parent



Posted: 03/09/2012 5:21 pm

About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
2012-03-09-images-mejacsubwaysmall.jpg
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.
1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...
3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check outShut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.
5. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
6. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...
7. I want to talk about my son/It's hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.
http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html
READ MORE - 7 Things You Don't Know About A Special Needs Parent