If Someone You Love Is A Caregiver

 child development  5 Responses »
May 172012
 

This is the third in a series highlighting “The Complete Caregiver,” whose mission is “to assist parent-caregivers of special needs and medically fragile kids by providing information, activities, resources and support to help them take care of themselves while being great caregivers to their children.” 

Below is the final installment of my three-part interview with Lynn Rosser, founder of “The Complete Caregiver.”  Also be sure to check out the first installment, “General Intro and Resources,” and the second installment, “If You Are A Caregiver.”

POST THREE: IF SOMEONE YOU LOVE IS A CAREGIVER

I will never forget where I was when I got the phone call that my little nephew, not even born, had only a short time left to live.  He had just been diagnosed in utero with a heart condition, and doctors weren’t sure he would even survive the pregnancy.  This just weeks after his older brother, the first grandchild of the family, had been diagnosed with autism.

More than seven years later, I am happy to report that the little baby is now a healthy, happy boy, though he and his family have been through hell and back in the interim, with multiple surgeries and health scares, at the same time as they struggled to provide the best care possible for his older brother.

As some of you may already know, the little boys described above are the two sons of Lynn Rosser, my sister-in-law and the founder of The Complete Caregiver (TCC).  It is hard to describe the feeling of helplessness we all felt when we first heard the devastating news of the double-whammy diagnoses or the bewilderment we experienced at the thought of how we could possibly help the family cope.

Enter the final part of my interview with Lynn, as she provides tips for friends and family of caregivers on how to best support those caring for special needs or medically fragile children.  Consider the list below as a precious gift, since those who are going through a crisis will rarely be able to articulate to you their needs.  It is a post I wish I had been able to read seven years ago!

Q: If someone has a friend or loved one who is a caregiver, how can they best provide them with support?

A: There are a lot of things you can do! Here is a quick list of tips:

  • If you are local, offer to accompany them to appointments to provide support and write down what the doctor or therapist says to do.  That alone can be very helpful.
  • Assuming you feel comfortable with the child’s care needs, offer to provide some respite, even if it’s just so the caregiver can get a nap, take a shower or run an errand – it all helps!
  • If you are able, consider offering to run errands, to do some housework or take care of a pet for your friend or loved one’s family.
  • If the family has other children that need attention, consider taking them to a park or a movie or something, or having them hang out with your family for a day.
  • Don’t say “call me if you need me” and expect the caregiver, who is overwhelmed, to follow through. If you are really sincere, it helps sometimes to say “I’m coming by to help you if you need it – here’s what I can offer – what works best for you?”  I’ve had people say “call me” and then if you work up the courage to do so, they suddenly back-pedal, so if you are willing to help, make sure you define your boundaries and take the lead in setting up the date, time and activity.
  • Providing some take-out or home-cooked food for a meal is a great way to say you care!  Always make sure you know food allergies / sensitivities and preferences before dropping off a meal to make sure it can be enjoyed! You can bring food to a hospital, usually, as well. At the hospital, offer to sit with the child, if you can, while the parent takes a break. Sometimes just a quick visit, a hug and a cup of “outside” coffee or tea is an amazing refresher.  Little things count!
  • If they are in a hospital far away, sending a card of support, or even an “I ‘heart’ you” text can be a good, instant connection.
  • Care packages for families in the hospital are greatly appreciated. Consider collecting money from their community for a general ‘debit’ gift card, which can be extremely helpful – hospitals are expensive and hotel costs, fuel, or other travel expenses can be overwhelming.  Consider sending a small gift for the child and the parent. Other items for a care package might include puzzle books with mechanical pencils, snacks, mints, a journal (see below), toiletries (if the trip is sudden), a novel or book (or, if your friend has a reading device like a nook or kindle, gift them a couple books they can access through the web and put a card in the care package letting them know what they are receiving), a natural fragrance / room freshener, etc.
  • Care packages for someone who is not dealing with being at a hospital, but whose child has just received a big diagnosis, can also be wonderful!
  • Consider introducing them to The Complete Caregiver site and especially to the “Your Family’s Exceptional Circle” – offer to be an “administrator” and set them up at the link provided to “Lotsa Helping Hands,” an amazing, free, private way to organize practical help for caregivers!  Or, if they don’t need that kind of practical support, CaringBridge may a great way to share what is going on with a large group of people.  Also, the “New Diagnosis?” or “Understanding Your Child’s Diagnosis” is another good place to start on the TCC website.
  • I would also recommend my TCC Workbook Journal, as it is designed exactly for the purpose of helping parent-caregivers, and would be a great gift for someone at a hospital with their child, or even at the time you hear of a new diagnosis. It is especially for people who will be providing long-term medical and/or developmental care.
  • Keep in-touch, offer a listening ear without judgment or un-asked-for advice. Sometimes being a reflective listener or ‘sounding board’ is all someone really needs to get their head clear and their spirits up!
  • Sometimes it’s hard to know what to say. You may not have had a similar experience, but you can still relate to the caregiver’s feeling of being overwhelmed, frustrated, or sad, or whatever is being expressed. The point is to honor what they are feeling and offer connection. If a family might lose their child, or is having a serious, life-altering medical issue with a child, finding ways to offer compassion, empathy, and genuine connection are the way to go.  Be mindful not to offer platitudes (Time Heals All Wounds, etc.), sympathy/pity instead of empathy, or to share how much worse someone else’s situation is – these tend to be distancing and can even make the caregiver feel bad! Be courageous – it takes a lot to allow yourself to be present in the midst of someone else’s pain, but it’s one of the most important gifts you can give.
  • Finally, if your friend or loved one is receptive to spiritual assistance, offer to keep the family in your thoughts, hearts, and prayers.  And then do it!  Take some time to write down everyone and everything you want to pray about, or send love to, and then make a point of offering them up.

The Complete Caregiver was founded as a service to parent-caregivers and includes pages on organization of care and life (The Caregiver’s Footsteps), self-care for caregivers (The Caregiver’s Well), Caregiver Resources, and Road Maps for Families of Special Needs Kids.  Be sure to check out the latest addition, TCC Music for the Heart, which includes music donated by amazing artists who support the mission of The Complete Caregiver.

Media Recognition for The Complete Caregiver:

Asheville Citizen-Times, 3/28/10

Laurel of Asheville, June 2010

“Your Carolina,” July 2010

All images provided courtesy of The Complete Caregiver

This post has also been shared at Natural Mothers Network Seasonal Celebration Sunday.

If You Are A Caregiver

 child development  2 Responses »
May 062012
 

This is the second in a series highlighting “The Complete Caregiver,” whose mission is “to assist parent-caregivers of special needs and medically fragile kids by providing information, activities, resources and support to help them take care of themselves while being great caregivers to their children.” 

Below is the second installment of my three-part interview with Lynn Rosser, founder of “The Complete Caregiver.”  You can read the first installment here.

POST TWO: IF YOU ARE A CAREGIVER

1.  Why is it so important for caregivers to take the time to nurture themselves?

I reference a study on my site that shows how the additional stressors of being a family caregiver (physical, financial, emotional, relationship challenges, isolation, etc.) can have a strong negative impact on the health of the caregiver. (Family Caregiver is the broader term for anyone who is the primary caregiver for a person in their family who has medical / developmental / mental health needs that require extensive participation in that person’s care).

I realized that it would be really easy for me to get burned out, and, having had a major illness of my own in the past, how essential it was for me to do preventative care for myself.  So, between the studies out there and the personal knowledge of day-to-day life as a parent-caregiver (can you say extended sleep deprivation?), it became extremely important to look at taking care of myself, so that I could continue to take care of my kids.

Parent-caregivers are not only vulnerable to increased risk of physical disease, they are also at higher risk for depression.  This is understandable, really, given the nature of special-needs parenting and how challenging it is; always jumping through hoops to get help, being sleep-deprived, dealing with grief over your child’s struggles, feeling isolated, etc.  So mental health is something that really needs to be addressed.  Self-care can go a long way towards counteracting stress, which is an aspect of the depression parent-caregivers encounter.  Under the Resources page I have some links for Emotional Health, and the Caregiver’s Well section is full of self-care information and ideas.

2.  What was your own experience struggling as a caregiver without a resource like The Complete Caregiver (TCC)?

I felt lost.  I really wished there had been a central site that provided encouragement, addressed the issues of both organization of my child’s care and self-care, and took me to some essential resources so I didn’t have to dig for them.  I also wanted my information in a beautiful, soothing format without the constant distractions of blinking ads and pop-ups, or pages of dense text without visual breaks.

You see, another thing to consider, which I’ve experienced and that isn’t widely recognized, is that parents who have just received a diagnosis for their child and who are trying to get a handle on this huge, scary development in their lives, can be experiencing shock.  Information cannot be processed as easily when in this state.  You need more visual breaks, multi-media, and cut-to-the-chase how-tos. Too often great information is formatted in ways that feel overwhelming – I’ve worked hard to do it differently on my site, and still provide quality information and advice.

3.  What message would you like to give you someone just starting their journey as a caregiver?  What is the best way for someone to get started with TCC?

Please know you are not alone.  There are resources, there are lights along the path, and there are joys and rewards in the midst of all the things that feel insurmountable and painful.  There are people on similar journeys who will reach out to you and that you can connect with, who are full of compassion and will be glad to share what they know.  I’m one of them, and I invite you to connect to the site, explore it, and if you like, to connect with me directly at lynn@thecompletecaregiver.com.   I can answer questions, help you research what you want to know, and give you some support – there is no charge, I’m happy to help!

As to the site, on the homepage there is a link for “New Diagnosis?” under the main links. You may want to start there if you have just received your child’s diagnosis and are looking for a very first step.  Otherwise, I would recommend you go to the Caregiver’s Footsteps Step-by-Step guides and see if anything there can help you in a practical way.  If you need some self-care, go to the Caregiver’s Well and explore those topics – there is a relaxation exercise, information on journaling, poetry to read, “visual vacations” you can take (love these beautiful videos!), music to listen to, poetry to read, and great info on exercise and nutrition, too.

4. You are also an amazing poet. (You can read a sampling of Lynn’s poetry here).  How did this creative outlet help you in your own journey as a caregiver?

Well, thank you!

With both boys receiving diagnoses within a month of each other, I was emotionally overwhelmed.  So much emotional and spiritual “stretching” happened so quickly, it went way beyond normal language or conversational words.  It needed the language of poetry, metaphor and simile to express what I was feeling, to even get a handle on how I felt.  I am working on some new poems as well, and hope to put them together with my previous chapbook of poems “In The Womb Of The World” to create a larger work. Processing this experience does not stop, and when regular words fail, poetry opens up new worlds.  I will be writing an article on this very thing for the newsletter of the Family Support Network out in Durham, which is connected to Duke University Hospital.  I’m excited to have that opportunity!

Media Recognition for The Complete Caregiver:

Asheville Citizen-Times, 3/28/10

Laurel of Asheville, June 2010

“Your Carolina,” July 2010

Stay tuned for the final installment of our series on The Complete Caregiver – “If Someone You Love Is a Caregiver.”

All images used with permission from The Complete Caregiver.

The Complete Caregiver

 child development  8 Responses »
Apr 282012
 

This is the first in a series highlighting “The Complete Caregiver,” whose mission is “to assist parent-caregivers of special needs and medically fragile kids by providing information, activities, resources and support to help them take care of themselves while being great caregivers to their children.” 

Below is the first installment of my three-part interview with Lynn Rosser, founder of “The Complete Caregiver.”

POST ONE: GENERAL INTRO & RESOURCES AVAILABLE

1.   Tell us a little more about The Complete Caregiver and who it is designed for.  What was your goal in creating TCC?

Well, The Complete Caregiver has the mission of serving and assisting parents of medically fragile / special needs / differently-able kids.  The main goal is to look at two major aspects, which are care for the child and care for the self, including relationships and family life, etc.  It is a very big topic, and the site has a lot of content, and will continue to have content added to it as I am able.  TCC is currently something that I do on my own in my spare time, as a service.

2.   What inspired you to focus on caregivers?

My husband, Chris, and I are parent-caregivers of two awesome boys.  My eldest son has severe autism, which was diagnosed officially at 2 1/2 years, though we knew something was wrong by 18 months.  My other boy has HLHS, which is a major congenital heart defect.  He had three open-heart surgeries and multiple cath-lab visits for angioplasties, etc.  Because of our experience, I was so full of this heart-wrenching ache at the beginning of all of our challenges – it was like being lost in a dark woods with no knowledge of where we were or how to get help. Along the way I met so many amazing parents and their beautiful, resilient children, who were in the same dark woods we were, that I felt an inner call to DO something to share what knowledge I had gained, in the hope of helping someone else along, and give a little light to someone else’s path.

3.  What obstacles do caregivers face and how does TCC address them?  What resources does TCC provide?

The obstacles faced are really incredible, and they are unique to each family’s situation.  It is very challenging to explain in some ways because having a child with a life-long disability and/or medical issue can affect your whole life and lifestyle.  This means all of your relationships, what you are able to do in the world as far as your job, your community participation, your ability to travel, and then there are the simple every-day things, like grocery shopping, finding childcare, how much laundry and clean-up you need to do, how much personal care your child needs (i.e. toileting, bathing, getting dressed, assistance with eating, etc.), medical care they need (medicines, medical procedures, appointments, therapies, etc.) and if they need other kinds of assistance with communication, mobility, monitoring interactions with siblings, tutoring, etc.

Then there are school-age children who need an IEP (Individual Education Plan) to meet the law’s requirement that all children be provided with education, or they may need a 504 plan in place for the school to meet an issue with a medically fragile child, or one who has mobility issues so that they can have access to education.  There are evaluations of various kinds, massive amounts of paperwork, and hoops to jump through to get services for your child.

There is frustration, stress and at various times there is grief. 

My site has a lot of content that goes under several basic headings:

The Caregiver’s Footsteps, which are step by step “how to’s” and ideas for caring for a special needs / medically fragile child.  Because my topic is so broad, I have begun by addressing the topics that are most frequently needed, like organizing medicines and creating a 24 hour care schedule. I really am working behind the scenes to expand the topics under this heading!

The Caregiver’s Footsteps

Your Child’s Care

The Caregiver’s Well is all about self-care for caregivers.  From personal experience, it is easy to become exhausted. Self care and organization are the biggest things I need to do for myself, and my goal is to make it so others don’t have to reinvent the wheel, or can at least see what I’ve done as they decide how to handle their own journey.  Topics include journaling, “Nurture Your Life” – Seven Steps to putting You back in your life, Relaxation for Caregivers, Nutrition & Exercise, Healthcare for Caregivers, Poetry, Visual Vacations (youtube collection of wonderful nature videos), Creating Resilience, and more.

There is a Resources section as well.  I have some solid general resources that I’ve researched after weeding through what is available. There seems to be an infinite amount of information I could be providing, so rather than write a multitude of articles about topics that are fully covered on official government sites, in those cases I simply explain the basics and link to the rest (like education policies or MedlinePlus for understanding a diagnosis, etc.) I still have major goals regarding creating more content and resources in the future.

In the Resources section, there are free PDF forms you can download that may be helpful in organizing certain aspects of your child’s care, like a 24-Hour, seven day template to schedule care needs, a medicine chart, etc.  Also, I have written The Complete Caregiver Journal Workbook, which serves as an organization tool, a personal journal, and a means to keep track of both your child’s care and your own health and well-being.

I have some good autism resources posted specifically as well – and there will be more to come on this, too!

4. Would you mind telling us how old your sons are now and how they are doing now?

My eldest son is 10, and he is in need of some intensive interventions if he is to have a shot at a more open group home as an adult.  That’s the reality right now.  We’d love to be able to take care of him forever ourselves, but that isn’t realistic with his degree of autism and behaviors, which include aggression and self-injury. He is struggling with so many sensory issues, communication issues (he is non-verbal), behavioral issues and learning difficulties, that only very, glacially slowly get better and sometimes regress.  We do everything we can for him, and hope that a communication device, like the amazing new non-verbal communication apps that use picture choices for the iPad, might be of help to him if we can get him trained.  He is very smart, but his challenges are so great that his light is hard to see at times.  The good news is that we are working on getting him what he needs to help him, and have some hope that we can move forward.  I have to say something here, and that is, it’s not about “fixing” him or trying to make him be “normal,” it’s about making sure he has a chance to lead a full and happy life when we are no longer able to care for him.  We love him and accept him unconditionally!  We work hard to give him the best of the options available to him, and that meet his needs.

My youngest, he is seven now, and doing amazingly well!  We are so grateful that he is on the far-right-side of the ‘bell curve’ with his HLHS!  We are very aware of how lucky we are to have that good news.  We hope and pray his strong little self keeps up the good work!

Stay tuned for the rest of our series on The Complete Caregiver – “If You Are a Caregiver” and “If Someone You Love Is a Caregiver.”

All images used with permission from The Complete Caregiver

This post has also been shared at Natural Mothers Network Seasonal Celebration Sunday.