Posts tagged ‘parenting’

August 31st, 2011

Top Take Aways: Advocating for Others Webinar

by Amanda

There’s nothing quite like hearing others share stories of empowerment, overcoming challenges, and making a real difference to make you feel inspired. On Monday evening, we hosted our Advocating for Others webinar with Health Activists Janeen and Marla - and I learned so much from these powerful parents. In our community, we often focus on patient Health Activists, but there is a group of dedicated, passionate leaders who have followed a similar path – through caring for someone else experiencing a health condition. This month we focused in on this particular group of advocates and our webinar was a wonderful way to tie up the month on a positive note.

Though Marla and Janeen each bring different skills for overcoming challenges in the world of caregiving Health Activism – there was a lot of common ground and advice that could apply to anyone in a caregiving position whether you’re caring for your child, your spouse, or someone else you love. Here are my top take-aways from the webinar:

 

  • Educate yourself first. When facing the diagnosis of a loved one, learning as much as you can is the first step. By investigating on your own, you’ll become more confident about your new role as caregiver and be able to be the best advocate.
  • Your story can inspire greater awareness. Marla said that, along the way as she learned and highlighted her son’s potential and achieved milestones, this was an excellent way to open up the conversation and educate others about special needs.
  • You know your child or loved one – be ready to step up and speak for them when you face the world outside. You may be uncomfortable at first – but you will grow into this naturally.
  • One of the biggest challenges is having others understand and making sure they are respectful of you and your choices as a caregiver. Don’t give up. Find people who will support you. Whether that’s family or friends – find people who understand, can give you what you need, and will be able to help you get things you need to in life.
  • Put on your oxygen mask first. Remember, you need to keep yourself in mind. It can be easy to fully immerse yourself in caregiving and neglect your own needs – be aware of when this may happen. Find time for yourself when you can. Pursue your passions. Use your creativity when you can. Connect with others and be social. This will ground you and keep you from becoming overwhelmed. Find stress-relievers that work for you. Schedule it in and pursue what makes you happy. Date nights! Outings with friends! Take time for yourself when you can.
  • Connect with others online – share anecdotes, facts, and what works for you – this could really help other people and, by talking to them, you could learn from them. The online community is the best way to connect. No matter where you live – you can find others who have stories and experiences that you will relate to. Use this and take comfort in everything you can learn there.
  • Anyone can be an advocate. No one is really prepared at the beginning but anyone has the ability to get there and be involved. You don’t even need to have a loved one in the community for you to be an advocate for that community. You will grow into your advocacy. You will find a way, no matter your personality, to be an advocate. Especially if you’re speaking for someone you love or doing something you love.
  • Don’t stop. If people aren’t able to support you and give you what you need – gravitate to those who will. Don’t get discouraged when it gets tough. Look for opportunities to educate, even when it is tough. You can sometimes turn ignorant off-hand comments into the chance to educate and start a conversation.

And, in summation, we asked our panelists: if you could only give one piece of advice to a new caregiver or parent, what would that be? Here’s what they said:

Marla: Take it one day at a time.
Janeen: Trust yourself. Know your child or loved one. You know what’s best. Go with your instincts.

Such great advice. Stay tuned for the archived webinar so you can watch the presentation! And I will be posting a more in-depth recap as well.

And here are the slides from the webinar for you to check out. Feel free to use any of the topics to start a conversation in your own community or blog. And check out the resources on the last few slides that Marla and Janeen recommend to new parents or caregivers for the Special Needs, Down Syndrome, Food Allergy, or Asthma communities:

Advocating For Others Webinar
View more presentations from WEGO Health

CategoryAdvocating for Others, allergies, August, caregiving, webinar, wego health | Comment3 Comments »

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August 26th, 2011

Between a Rock and a Hard Place – The Sandwich Generation

by Amanda

Perhaps more now than ever before, adults are caring for both their children and their parents. This leaves adults caught in an especially challenging position. It’s rare to see children move out the day they turn 18, many in fact are staying “home” well into their twenties thanks, in part, to the economy and difficulty finding jobs. But what’s more stressful (financially and beyond) is adding family members on the other end of the spectrum – aging parents and relatives who may move in. The number of people who are sandwiched between these generations is growing. These folks must provide health care and support for their families and this is no easy task. Tayla delves into this topic in her post and offers some tips for anyone who may be in this position. –Amanda

 

Between a Rock and a Hard Place – The Sandwich Generation

by Tayla Holman

 

We’ve already talked about the “skip generation” – grandparents raising their grandchildren when the parents are unable to – so now it’s time to talk about the “sandwich generation.” The sandwich generation consists of baby boomers who are not only taking care of their children, but their parents as well.

 

As of 2009, there were about 20 million adults making up the sandwich generation and, as with most caregiver statistics, it is primarily women who are saddled with the responsibility of caring for both their parents and their children.  Almost 2/3 of caregivers are women, and more than 80 percent are caring for a relative that is 50 years old or older. The average caregiver in the United States is a 49-year-old woman who works outside the home and provides 20 hours of unpaid care.

 

As with most caregiving, being the “meat” in a sandwich generation can be incredibly exhausting mentally, physically, emotionally, and financially. Caring for growing or grown children – those that have moved back home after college after not being able to find a job or being laid off – as well as aging parents is expensive. And with more people living longer, healthier lives, many elderly parents are choosing to remain in their homes as opposed to assisted living facilities or retirement homes. The cost of transportation, hospital visits, medication, etc. adds up quickly.

 

Last year, President Obama introduced a proposal to spend $102.5 million to help those who are caring for their elderly parents as well as their children. Unfortunately, a recent study by the AARP found that family caregivers do $450 billion worth of unpaid work, a $75 billion increase since 2007.

 

Caregiving in general is no easy task, but being sandwiched between taking care of children and parents is especially hard. Here are some tips for how to manage the responsibility.

 

  • Ask for help. – Caregiving is often a one-person job, but if you have family or friends that are willing to help, let them. Don’t feel ashamed or embarrassed; you are not superhuman and can’t be expected to do it all alone.
  • Make time for yourself. – You won’t be able to take care of anyone if you don’t take care of yourself first. Make sure you are paying attention to your own needs as well as those of the person you are taking care of.
  • Crunch the numbers. – Take some time to get your finances in order. Figure out how much you can afford to put away for retirement, for your children’s college education, medical costs, and any other expenses. Make sure you have a safety net in case of an unexpected emergency.

 

Are members of your community also members of the sandwich generation? How do discuss managing the responsibility of caring for parents and children? What advice do you have for others juggling the two?

 

 

CategoryAdvocating for Others, alzheimer's disease, August, Burnout, caregiving, Health care | CommentNo Comments »

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August 24th, 2011

Interviewing Health Activists: Adrienne Bashista on Advocating For Your Child

by Amanda

Today we’re excited to share with you an interview with a Health Activist caregiver, parent, author, blogger, and hard-working advocate for another. Adrienne Bashista is active online in numerous different places, co-authored the book Easy to Love but Hard to Raise, writes at a blog of the same name, active in the online ADHD, FASD, and developmental disorder communities. Her mission online, which is reflected wonderfully in this interview, is to be real about the challenges and struggles that come with caring for a child with “invisible” disabilities. I think you’ll enjoy what Adrienne had to say as much as I did, and hopefully learned a thing or two. –Amanda

 

WEGO Health: What inspired you to become a Health Activist Caregiver? What inspired you to take the next step toward advocating for your child?  What inspired you to start your site/book?

 

Adrienne: Like many (if not all) parents of kids who have special needs, I started my journey simply in search of someone to talk to. Someone like me; someone with a kid like mine. The parents who I met while raising my older, neuro-typical son, have become my best friends. They are great supporters and we share much in common, but when it came to the specialized parenting that my younger son required it eventually became clear to me that they couldn’t relate. The early days of parenting my son – before we really found the medical and therapeutic help we needed – were extremely difficult and stressful and I’m sure it often sounded like I was blowing things out of proportion or that I was complaining too much. Certainly decisions we made about doctors and assessments and therapies were greeted with skepticism. Before the experience of raising a child with a developmental disorder, ADHD, and FASD I would have probably been skeptical, too. My whole world view has changed. Because of this world view change I became desperate to find other people like me; thus my journey to create our book and accompanying blog: Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories.

 

Kay Marner (the other co-editor) and I came up with the idea for the book because we knew that although it seemed like we were the only people struggling with these parenting issues, that indeed, we were not alone. There were plenty of parents just like us – but where to find them?  We felt there needed to be a collection of essay about people who were parenting children who had emotional and neurological difficulties that resulted in behavioral problems. Kids who couldn’t be managed using instinctual parenting methods, or sticker charts, or magical countdowns, or whatever methods worked for kids whose behavior issues weren’t as great as our children’s.  The response to our original call for contributions was wonderful: we now have 30 parent-contributors and almost 20 “experts” who helped us with the book, but what’s been even more wonderful is the community we’ve formed through our blog and our Facebook page. Finally I have people around me – even though their proximity is virtual – who have been in my shoes. It’s such a comfort.

 

WEGO Health: What do you wish others knew about being a Caregiver?

Adrienne: How conflicted we feel on a daily basis. I think it’s easy to portray parents of special needs kids as ‘saints’ or ‘wonderful’ or as doing something that other people can’t do, but in reality we are simply doing what we have to do, like all parents. It’s really easy to feel resentful about all of it, but at the same time it’s completely taboo to be angry about parenting a child with special needs. I love my son with all my heart but he is very, very difficult to parent. That’s the truth of the matter. Being told “I could never do what you do,” makes me angry – both because I think most people rise to the occasion when it comes to their children, but also because it puts me on a pedestal, and that’s an uncomfortable place to be. It’s a lot further to fall.

On the Easy to Love blog as well as the Mom’s View of ADHD blog, where I’m a contributor, I try to be as honest as possible about my experiences. If that makes me sound like an angry, resentful person, then so be it, but hopefully I’m coming across as a human being who’s been put into a difficult situation. And hopefully people can relate.

 

WEGO Health: How do you maintain balance between being a Caregiver and managing your own health, work, etc.?

Adrienne: Ha ha ha! Balance? What’s that?

Just kidding. Actually, these days my life feels very balanced, although from an outsider’s perspective it may look somewhat skewed because of the choices I’ve made to keep my family life sane. First choice: I quit my job. This was a career in which I’d had 15 years invested and a Master’s Degree…but I couldn’t do it and take care of my family’s needs at the same time. Next choice: we pulled our youngest son (our ‘easy to love’ child) out of school so we could homeschool him. In school he was crashing and burning. It was a real square-peg-round-hole situation and it created all kinds of stress in his life and in ours. The school was not very responsive to his needs so we made the choice not to stay and fight for services – which probably would have been at least 2 more years of his failure and my mental health sacrificed – but to quit.

Both of these decisions made me MORE of a caregiver for our family, but both were the right decisions for us and have resulted in a more harmonious life.  As for the rest of it – it gets fit in whenever and wherever it can. Although I quit that full-time out-of-the-house job I still do other paid work, but it’s work that can be done while kids are at playdates or at night or on the fly. And it turns out that doing this work – writing and editing books and blogs and doing PR and marketing for our family business – is rewarding and important in a way that my previous career wasn’t. With increased quality of life comes less stress, with less stress comes better health. So it all works out.

 

WEGO Health: How has the internet and social media changed the role of a Caregiver?

Adrienne: I’ve only ever cared for my child during the age of social media, so I can only imagine how difficult and isolated parents caring for kids like my son felt without online support. I live in a pretty small town and although I know of support groups for parents like me, they meet an hour away from where we live and only once a month. With our blog and our Facebook page, as well as a couple of other great on-line support groups I belong to, I can post a question and have a range of answers within minutes. I also don’t think I’d know as much as I do about my son’s various diagnoses had it not been for the Internet. FASD, in particular, is something that there’s not much written about, nor is there much support for – online or offline. It’s getting better, but without the internet I’d probably know next to nothing. I predict that social networking will be where advocacy for kids and families impacted by FASD will really take off. I’m excited to be a part of it.

 

WEGO Health: Anything else you’d like to share?

Adrienne: Just that I’d like to invite anyone reading this who is taking care of a child whose behavior pushes your parenting to the limits on a daily basis to join the conversation at the Easy to Love but Hard to Raise blog and Facebook page. We are looking for guest contributors. The more the merrier!

 

Thanks so much for sharing with us, Adrienne. Your candid approach to these tough topics is inspiring and no doubt really influences your community in a positive way.

Check out more of Adrienne’s work!

Check out Easy To Love, and her Publishing Press DRT Press – Books for Families, and Like Easy to Love on Facebook.


 


CategoryAdvocating for Others, August, caregiving, health activists, interview, wego health | Comment2 Comments »

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August 15th, 2011

Grandparents and Caregiving – The “Skip” Generation

by Amanda

Today we have a post written by Tayla that takes an inside look into a specific type of caregiving and the interesting implications therein. –Amanda

 

Grandparents and Caregiving – The “Skip” Generation

by Tayla Holman

A growing area of caregiving is that of grandparents taking care of their grandchildren, or even their great-grandchildren. Grandparents who are raising their grandchildren are often referred to as the “skip generation.” A “skip” generation refers to a generation two or more below a person. The resulting household is sometimes called a “grandfamily.”

 

There are almost 6.7 million children in the United States living in grandfamilies, according to Census data from 2009. That’s a 64 percent increase from 10 years ago. 2.5 million children are living primarily with their grandparents, with neither biological parent present in the home. The economy has played a big role in grandchildren living with their grandparents, due to many parents – especially those who are young or single – being financially unable to take care of their children. There are other reasons, such as abuse and neglect, that also lead to more grandparents taking in their children’s children.

 

So what does it mean to be a grandparent providing care to one or more grandchildren?

 

It may mean having to postpone retirement plans for a couple of years, or losing post-retirement freedom. It may also mean having to keep a closer eye on finances now that there are more mouths to feed. It also means becoming a parent all over again, going to PTA meetings and helping with homework. And that’s just for grandparents taking care of grandchildren who are healthy.

 

For grandparents who are taking care of grandchildren who are mentally or physically ill, the responsibility can be an even bigger strain, both financially and mentally. There are some programs in place, such as the “Grandparent Subsidy” in Washington, DC, that provide financial assistance to grandparent caregivers, although that program recently received cuts to its budget.

 

As a grandparent caregiver, it is important to know that there are resources out there. We’ve already compiled a brief list, but there is one more that should be added. Grandfamilies.org is the website for the Grandfamilies State Law and Policy Resource Center, which is a collaboration between Casey Family Programs, the American Bar Association’s Center on Children and the Law and Generations United.  Grandfamilies.org offers information about adoption, financial assistance, caregiver support programs and more. This site is essentially a one-stop destination for all things related to being a grandparent caregiver.

 

With more and more grandparents becoming caregivers, the need for resources – financial and otherwise – is steadily increasing. What are some other websites or programs we missed? It is said that it takes a village to raise a child, so where else can grandparent caregivers find support once they’ve reentered parenthood?

 

 

CategoryAdvocating for Others, aging, August, caregiving | Comment1 Comment »

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August 10th, 2011

Empowering Caregivers: Welcoming them to our Health Activist Community

by Amanda

More than 65 million people provide care for loved ones, averaging 20 hours a week. But, like many words in the health world, “caregiving,” carries around a vague set of meanings and connotations. As I write this, spellcheck is telling me that it isn’t a word (though neither is “spellcheck”) but it is a word and, more importantly it is a whole entity. It’s an act, a title, a career path, and a community of often under-recognized members of healthcare. Let’s bring caregiving into our conversation about Health Activism today.

First, let’s take a look at the official definitions for the term caregiving:

The Sloan Foundation tells us, “Caregiving is the act of providing unpaid assistance and support to family members or acquaintances who have physical, psychological, or developmental needs.”

The AARP tells us a bit more: “Person responsible for meeting the physical and psychological needs of an infant, child, or dependent adult.”

And the legal system notes that an “[i]nformal caregiver is a family member or a natural person who aids and supervises the daily cares of a disabled person.”

Who are these caregivers? The majority are family members and common examples include:

  • Parents taking care of a child who is mentally or physically ill.
  • Children taking care of an aging or sick parent.
  • Adults caring for other relatives.
  • Increasingly, there are grandparents acting as caregivers to their grandchildren.

Now let’s think about caregiving in our terms. Words like “support, needs, supervising, care” speak to our e-patient-turned-Health-Activist community. But nowhere in this caregiving research have I come across the language of “empowerment” with regards to caregiving. This is harrowing. Are caregivers empowered? Why isn’t this option being discussed? Most articles, studies, and conversation centers around the immense population of caregivers who suffer from depression and anxiety (a victory of sorts for combating stigma related to mental health) but nowhere does it discuss the alternative – the strong, self-educating, sharing, interactive caregiver. Can we turn the conversation around and commend caregivers in a way that encourages Health Activism or pride in their advocacy? I hope so.

Proof that caregivers are our peers? This 2011 Self-Identifying Caregivers Survey says, “Over 90% of family caregivers become more proactive about seeking resources and skills they need to assist their care recipient after they have self-identified.” Similarly, “83% of self-identified family caregivers believe their self-awareness led to increased confidence when talking to healthcare professionals about their loved one’s care.” Sounds familiar, doesn’t it? These are integral traits of Health Activists.

Additionally, it probably comes as no surprise, but the relationship between women and caregiving is substantial. See if any of this information from the Family Caregiver Alliance relates to our Health Activist community:

Within our complex system of long-term care, women’s caregiving is essential in providing a backbone of support...Women provide the majority of informal care to spouses, parents, parents-in-law, friends and neighbors, and they play many roles while caregiving—hands-on health provider, care manager, friend, companion, surrogate decision-maker and advocate.5

Many studies have looked at the role of women and family caregiving. Although not all have addressed gender issues and caregiving specifically, the results are still generalizable to women because they are the majority of informal care providers in this country. Consider:

  • Estimates of the percentage of family or informal caregivers who are women range from 59% to 75%.6, 7
  • The average caregiver is age 46, female, married and working outside the home earning an annual income of $35,000.8
  • Although men also provide assistance, female caregivers may spend as much as 50% more time providing care than male caregivers.9

What if we replaced the word “caregiver” with “Health Activist” or “Parent Health Activist”? As you may know, the majority (upwards of 75%) of our own Health Activist community is female. Does this change the way you consider caregiving? How can we help empower this community of peers? According to this article by Anthony Cirillo, only 25% of caregivers turn to the web for support and community. Can there be a tailored e-patient movement for caregivers?

How can Health Activists come together to recognize those who are caregivers or caretakers and welcome them into our discussions about empowerment?

 

 

CategoryAdvocating for Others, aging, alzheimer's, August, caregiving, e-patients, wego health, women, women's health | CommentNo Comments »

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August 2nd, 2011

Advocating for Others

by Amanda

Last month we looked at self-empowerment and how to advocate for yourself, as a patient, and help your community members to do the same for themselves. This month we’re going to look at another type of advocating that has a whole different set of challenges, rules, and definitions of success: advocating for others.

Caregivers are a unique set of Health Activists who use their detective work, self-education, question-asking, and awareness-raising skills to advocate for the health of loved ones. These Health Activists dedicate their time to caring for a diverse list of people they love: be it their children, family members, parents, significant others, or close friends. Some Health Activist carers advocate for more than one person, keeping their whole family’s health in check. All caregivers work tirelessly (and, sometimes it truly is work - and not easy) to improve the lives of those they care for who may be living with chronic health conditions. They all have different stories to tell, but like patient Health Activists, they offer honest and powerful approaches, and are an inspiring bunch whose voices need to be heard by the greater healthcare community.

Whether you’re a parent who cares for a child with a chronic health condition or care for your spouse or another relative – you have a special set of skills that should be understood, celebrated, and shared. So let’s do that this month. Are you a blogger who writes about caring for your kids? Are you a tweeter who shares resources with fellow caregivers? How has your journey from individual knowledge-seeker translated into caregiver? What challenges do you face as someone who advocates for others? What have you learned along the way that surprised you? What support do you need when things get tough? How do you find it? Do you advocate for yourself as a caregiver?

We hope you’ll join us in reaching out and supporting all the many types of Health Activist carers this month and connect across conditions to learn from each other. Here on the blog we’ll be collecting resources, sharing stories, and highlighting some of the amazing carers in our online community.

 

 

CategoryAdvocating for Others, August, caregiving, wego health | Comment11 Comments »

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