Posts tagged ‘caregiving’

September 10th, 2012

Interviewing Caregivers: Kim of Young Carers Canada

by Leora

We’ve heard from parental caregivers, but what about if the roles were reversed? Adolescents who tend to their families needs can be caregivers too. Adapting to a lifestyle that is different from their peers, and sacrificing part of their childhood to help their families, Young Carers everywhere need the same support and encouragement that adult caregivers need. Maybe even more so.

 

It is estimated that in the United States there are 1.5 million young caregivers. Crossing the 49th parallel, I had the chance to talk to Kim Latour who participates in the organization entitled Young Carers Canada. Young Carers Canada’s mission is to spread awareness of adolescent caregivers, and help young caregivers find the support and resources they need. Kim had the chance to share with us her personal journey with being a caregiver recipient, as her children are Young Caregivers themselves.

 

How did you get involved with the Young Carers Movement?

Young Carers Canada is a growing movement that seeks to improve support and understanding for young caregivers.  I became involved with this movement six years ago.  At the time, I was a busy active working mother when I began to experience symptoms that made day to day living very difficult.  Within a short span of time I lost use of my left side, and was hospitalized.  I was later diagnosed with MS and unable to work.  Following this MS relapse, I was housebound and began to adapt to living with a variety of symptoms which required adaptation and assistance.

As I processed the shock, grief and fear of my diagnosis, I also faced the realization that my children who had very little household responsibilities up until then were going to have to adapt and take on more. They were 10 and 14 then and life as we knew it was going to have to change.

Fortunately the timing was just right in many ways.  I was grieving the loss of my career in social services just at the time that the Young Carers Movement was beginning to take shape.  The MS Society was a member on a task force of community organizations developing programs to support children living with a relative with chronic illness.  At first my children benefitted from the MS Society’s ‘Kids Klub ’ by participating in activities which offered them the opportunity to get away and ‘just be kids’ as well as meet others facing similar situations.  They learned about illness, its impacts, coping strategies and learned new skills.

When I was able, I was invited to join the taskforce to contribute a family perspective.  Very soon I became committed to find ways to ensure that others benefitted from the same support and assistance that my family received.

Today my children and I are passionate advocates for a new initiative called the Young Carers Canada movement that is working to become a registered national non-profit and hope to help facilitate the expansion of young carers programs to other communities. I am no longer able to work as a mental health caseworker, but I am excited to be able to utilize my experiences in a new way by volunteering on national and local Boards and Committees to help others.

 

Tell us a bit about your foundation/non-profit.
The Young Carers movement in Canada began with an initiative by the Alzheimer’s Society Niagara (ASNR) in 2003 which brought together various community service agencies serving both adults and youth to begin raising awareness and provide support for young carers.  This initiative has evolved into an independent, non-profit agency called the Young Carer Initiative (YCI).  The YCI has been successfully operating the Powerhouse Project for Young Carers in the Niagara Region and Haldimand County since 2007. This became the first project in the entire country designed specifically to meet the needs of young carers and their families.

Promoting awareness about young carers and their needs is just one of our activities, and this is a very important part of who we are. Part of this awareness campaign is to spread the young carers’ movement across Canada. To this end we are initiating a national program – Young Carers Canada – that is now under development. We also encourage and support other groups who want to start their own young carers programs in their communities.

In Canada there are 6 young carers programs at the present time:

* Powerhouse Project Young Carers Initiative (first program-Ontario)

* Hospice Toronto Young Carers Program (Toronto)

* Youth Caregivers Project- (Victoria BC)

* Comox Valley Youth as Caregivers (BC)

* MS Society- Niagara Peninsula Chapter of Hope offers young carer’s programming within the services they provide. (Ontario)

Awareness is important to this movement because the concept of young carers is new to our country.  Adults often worry that accepting the term young carer implies that they are neglectful. In fact, even in homes where a parent is competent, capable, loving, and nurturing illness does impact the whole family.

We describe a young carer as: “An individual under the age of 18 with a relative whose activities of daily living are restricted by a chronic disability, long-term mental or physical illness, substance abuse problem or other socio-economic factors such as a language barrier.”

Young carers can be in a caring role that is Primary, Supportive or Sibling. A Primary carer is the sole care provider.  These young carers take on an adult caring role when their parent is not able.  A supportive carer helps an adult, usually a parent, provide the care.  A sibling carer helps a brother or sister.  Support can be provided daily, or as needed depending on the fluctuating abilities of the affected adult.

 

There are so great ways in which your organization helps young caregivers. What do you like best about what you do?

Working with the Powerhouse Project and the Young Carers Canada steering committee has been an important opportunity for my children and I to contribute to a meaningful cause during a life changing time.  It has provided us with skills, support and opportunities for recreation that wouldn’t have been possible otherwise.  Knowing that our involvement is helping to move this concept forward nationally keeps us engaged in spreading the message.

 

What are some challenges that are unique to young caregivers?

 

There are many challenges that face children who provide care to a person with illness. What we hear from the children we serve is that they need to feel that their contributions are recognized and they need opportunities to ‘just be kids’. Our young carers programs provide opportunities for children to broaden their support network meeting other children in their community experiencing similar challenges while learning new skills and having fun. We focus on stress management, and building on strengths that exist within the families we serve. Children who provide care need to ensure that their own needs don’t go unmet in the scope of their care giving responsibilities. They need to seek out help when they feel overwhelmed. Good self-care, establishing balance, and feeling a sense of connection in their families and community can help to ensure resilience in young carers.

 

Also, when young carers interface with professionals they are often dismissed from conversations and instruction pertaining to care.  If a child will be participating in the provision of medical care and treatment it is vital that they receive the training, support and information that an adult in the circle of care would receive. Young carers often feel cast aside at medical appointments, and by health care providers.  Yet when the crisis has passed they are often left to manage complex situations.  Professionals need to ask questions during their intake procedures about who offers day to day supports and when ever possible be excellent detectives when ever children live in a home with a person living with chronic illness to be mindful of what level of involvement would best aid the family in the long term.

 

What would you like to share with the online health community? What do you wish others knew about your org and what you do? · Any events, projects, or plans that are coming up that you’re excited about?

This is an exciting time for Young Carers Canada. At this time we operate as a steering committee. We are in the process of completing the legal incorporation process. It is important for us to be a youth led organization so we have brought together a group of ‘Youth Champions” from across the country to establish the mission. A group of stakeholders from the committee (including service providers and researchers) will be putting together terms of reference from there the mandate for our national organization will be created and we will move to form a Board of Directors.

The existing five young carers programs all offer support, information, advocacy and recreational opportunities to children under the age of 18 who live with a parent or relative with a disability, chronic illness or language barrier.

One of the biggest challenges for the Young Carers Movement is that it is difficult for people to reach out for support due to fear of judgment. The grief process that accompanies illness and disability is very real. People feel vulnerable when an illness has profound impacts on their ability to function. Seeing, understanding and responding to the stress your illness places upon your close family is very difficult. The young carers’ movement is about celebrating the strengths in families and building in opportunities for growth and resilience.

 

If you know of a youth champion or know of one living in Canada who would like to contribute in this movement or would like to begin a young carers program, please send us a message at youngcarerscanada@gmail.com.

 

For more information check out their website, and for a bit of fun also check out the young caregivers rap!

 

 

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August 24th, 2012

#HAchat Recap: A Beginner’s Guide to Caregiving

by Caitlin

We’re sure you remember the day you became a caregiver.  Whether as a new parent or as a parent with a child living with a chronic illness/behavioral disorder/learning disability, or as a caregiver to a family member/loved one/spouse – the feeling is the same. Where do you start? What do you do with all of this information/test strips/medication/doctor’s appointments that have become your “new normal.” What happens when the idea of what you thought your life/marriage/family would be like changes completely?  In retrospect, there are things that all parents/caregivers in the online community wish that they had known. Luckily, we had the opportunity to pick the brains of our many parenting/caregiving Health Activists and have lots of tips for those who are new to the scene.

 

Know this

You are not alone. There are others out there, right now, in your exact position. On top of that, there are countless others who are in a similar situation who understand what you’re going through.  Know that though you may not know those others personally, they are out there, and they are ready to help. They are waiting in the virtual wings to answer all of your questions and guide you through the the journey that you are about to embark on.  They are there to deal with uncertainty and fear, and to help you learn everything you need to know to be the best possible parent/caregiver you can be.

Momof2T1s: offline connections provide something that online cant but 4 every 1offline I have 10 online friends who have my back #HAchat

 

Know that it doesn’t exactly get better, but you get better.

Momof2T1s:: it never gets easier – we get better. & just because something has been one way doesn’t mean there isnt’ a better way #HAchat

Serenebutterfly: Wish I realised that although every day not be good but there’s something good in every day! Love this quote! #HAchat

 

Know that failure is not a possibility, but that you are going to make mistakes. It will take time to figure out the best way to care for yourself and the one that you love.  Do your research; arm yourself with the knowledge to be a partner in the care team for the one that you love.

CaregiverSN: That it’s okay to make mistakes– it’s going to be a learning process for all involved. #HAchat

FeliciaFibro: that it would take years for me to figure out what works best for managing my #fibro – all of us are different. #HAchat

Know that you know your child/loved one best. No matter what doctor/healthcare practitioner/teacher/therapist that you are working with, you still know your child best. Trust yourself and your instincts.  Robertssister1: We know our care the best; especially important in emergency situations.

 

Get online

Yes, even if the idea of having to spend more of your day in front of the computer makes you want to scream, get online. Get a twitter handle, do a hashtag search with your/your loved one’s condition, look for online forums, check out some facebook support pages/groups, go to yahoo groups.  All of these resources will be your new support system. Because the internet doesn’t turn off. Sure, people go to sleep, but there’s someone on the other side of the world on twitter right now ready to answer your questions or provide support.

momof2T1s: – use a hash tag with chronic illness to locate others #HAchat

khuckabay: 1st thing is to register yourself on Twitter and Facebook if you are not already a member! #HAchat

Feliciafibro: look up what non-profit organizations support their conditions & contact them for tips, events,etc #hachat

 

Delving into the online community can be really overwhelming.  You are going to have to wade through a ton of information and a ton of different support communities.  Know that not all online communities are the same, and you may have to try out a couple different ones before you find somewhere that you’re comfortable sharing and participating.

kimmiCollas: not every group is comfortable, try lots until you find the right “fit” #HAchat

HealthcareNovel: Recognize that this participation in the online community is a journey. #hachat

Wegohealth: Great tip from a Roundtable: If something happens in an online cmty that you wouldn’t like IRL – leave. You’ll find better. #HAchat

 

Even if you may not be comfortable jumping into an online community, you have to get involved in order to know where you’re going to ultimately call your online home.

LALupusLady: lurking is allowed, give yourself a chance to test the waters. every one gets something else from the exp. #hachat

Khuckabay: jump in, don’t be afraid no one will bite #HAchat

LAlupusLady: My Social Media mantra from@JeffPulver “Listen, Share, Connect and Engage.” it works… #hachat

Mom2T1s: have a conversation – dont just tweet quotes/statistics or plug your own blog. 4 best results stay involved, retweet & reply #HAchat

Momof2T1s: xfiles says Trust no one – I say take everything w/a grain of sugar and it will eventually lead you to the right folks #HAchat

 

Looking for a  specific place to start? Of course many communities are condition specific, but others have resources for many different conditions/communities. Here are some recommendations from Health Activists?

Serenebutterfly: I love @patientslikeme. It’s not only great to track your or you loved one’s condition you can reach out to others patients #HAchat

FeliciaFibro: for #fibromyalgia, I think the Arthritis Foundation @arthritis_org is the most reliable organization at this time. #Hachat

Serenebutterfly: Also @treatdiaries is great for sharing coping strategies and is also great as it’s anonymous #HAchat

Tmana; For type 1 diabetes: @TuDiabetes, JDRF, Juvenation, @childrenwithdiabetes (Children With Diabetes)… #hachat

Khuckabay: For diabetes I always recommend the ADA, JDRF, Blue heel society, #DSMA, Diabetes Advocates, and Tudiabetes #HAchat

Robertssister:: I found a wonderful community of caregivers at http://t.co/IXWE3Ta5; very welcoming, non-judgmental #HAchat

 

Finally, the beauty of the online community is that it’s so diverse. Caregivers/parents/Health Activists can connect with each other across conditions in ways that are not always possible IRL.  So how do we preserve the engaging and supportive environment that we have created?

Serenebutterfly:: By keeping blogging, spreading awareness of the cause and by sharing tips on coping #HAchat

khuckabay: we can continue it by never turning anyone away, by keep the lights on, the doors open, and never stop learning more ourselves #HAchat

Are you a parent or caregiver that is active in the online health community? Do you have a blog? We are having a week-long blog carnival in honor of Advocating for Another Month (#A4AMonth) here at WEGO Health. Check out the Facebook event to RSVP and find the prompts, then tweet your posts using the hashtag #A4Amonth.  Tune in next Tuesday at 3 PM for a tweetchat recap of the Blog Carnival!

RSVP Here: http://www.facebook.com/events/499044693445245/

 

 

 

 

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August 21st, 2012

Today’s #HAchat: Tips for New Caregivers or Parents

by Amanda

As we kick-off our Advocating for Another Carnival – we have a LOT going on. Be sure to check out the #A4Amonth hashtag to read the fun, inspiring, and really creative posts of participants. If you want to get in on the fun – we’ll be doing this today until next Tuesday (and culminating the carnival with an #HAchat about it) you can grab the prompts here. Be sure to RSVP on our Facebook event so others can get to know you!

 

And now for today’s Health Activist Tweetchat. As some of you may know – we’ve been hosting Roundtables every Monday, Wednesday, and Friday this month on topics related to caregiving, parenting, and advocating. They have been absolutely amazing. By listening-in to our Health Activist panelists we’ve learned so much. Every-other-day we’re psyched to have another panel. They, and all the participants, are The Best. Today’s #HAchat is inspired by a question we’ve posed during the Roundtables that we hope will lead to a big list (or white paper) of tips, resources, and insight for those just coming in to the role of caregiver or parent.

 

Today’s #HAchat will be a big community brainstorm. First we’ll discuss starting out as a caregiver, parent, or advocate – and what everyone should be aware of as they delve into this new world and navigate the uncharted waters of this new condition.

 

Then we’ll move on to community-building and grab your tips for best participating in the online community. Do you recommend blogging? Sharing your story? Listening?

 

Then, next, we’ll talk resources. When it comes to providing excellent information, tools, programs, and support – which orgs, sites, and others are doing it best? Where would you send someone who just received a new diagnosis for them or a loved one?

 

And lastly we’ll talk about growing as caregivers, parents, and advocates. How can we work together? How can we bridge gaps, find commonalities, and keep this movement going?

 

It’s going to be a great chat and we hope you’ll join us at 3pm! http://tweetchat.com/room/HAchat#

 

 

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August 15th, 2012

Roundtable Recap: Advocating for a Loved One

by Amanda

We’re hosting Roundtable chats every Monday, Wednesday, and Friday at noon Eastern in August. This Monday’s chat focused on the topic of “Advocating for a loved one.” We hope you’ll be able to join one of the chats – you can RSVP here on our Facebook event to see who else will be attending. Here were Monday’s panelists:

 

Andrea Clay – Colon Cancer Alliance @houseofclay

Kristina Beard – Our Journey Through Life @GermanInAlabama

Denise Brown – Caregiving.com @caregiving

 

Roundtable Recap: Advocating for a Loved One

by Sharifa Simon-Roberts

 

Continuing in the spirit of this month’s theme, “Advocating for Another,” Monday’s Health Activist Roundtable focused on “Advocating for a Loved One.” Below, is a recap of the discussion which took place among panelists. If you are interested in joining us for one of our roundtables, please visit our Facebook event to RSVP. Here is a list of Monday’s participants:

 

During Monday’s Health Activist Roundtable, persons who advocate on behalf of a loved member shared their views on their role as advocates for their loved ones. As caregivers, they recognize they can serve as the voice of the patient and it is important to be empowered, have an input, not afraid to ask questions and stand up for the rights of their loved ones.

 

What ‘Advocating for Loved One’ Means

Kristina: It means taking care of my husband’s medical needs and speaking up on his behalf when he is unable to.

Denise: In addition, it’s being the voice that helps determine what is the best treatment option. You can personalize recommendations and options so it is right for you, family members and your family system. You know your family member’s history better than anyone else. You know what your family member can do and what your family member wants. That’s critical.

Andrea: I think the medical community is certainly more open to this than they have been previously but I think we really have to look at the health advocate as part of that team and we really need to make them feel valued and welcomed. Doctors’ orders are much easier to follow if you get that health advocate on your side.

 

Challenges

Kristina: One of the biggest challenges is self-care. I always preach ‘take care of yourself’ but it took me a while to learn. Juggling everything and not forgetting about myself and not losing the focus can be huge challenges.

Andrea: Not everyone agrees with the approach a family might take to facing an illness. To feel like you are facing a health crisis and to deal with personal criticism of how we were handling it hurt a little bit. It isn’t necessarily helpful to the caregiver in the midst of the storm.

Denise: So much changes that self-care seems like a good idea but then how do you actually implement it. I think there is an aspect of guilt that comes in with self-care – how do I take time away when someone needs me. Until you are in that situation it is hard for people to understand how hard that can be to figure it out.

 

Rewarding

Andrea: I’m going to use a cliché, ‘when life gives you lemons, make lemonade.’ [The experience] gave us a wonderful opportunity as a family to say maybe I could spend a year volunteering with a key cancer organization, which I did but even better we can look back at where we were 8 years ago and say we’ve been able to help countless families who found themselves in this position. We get to tangibly see how our family’s experience has been an encouragement to other families facing the same thing. That’s pretty unique. Not everybody gets that happy ending.

Denise: Parenting teaches you how to love. Caregiving teaches you how to live.

Kristina: When things go right; when I know I have taken at least one care off [my husband’s] mind. Someone has reached out to me and said ‘thank you for sharing your story because now I no longer feel alone.’ Sharing our story and knowing that it helps others, helps me immensely.

 

Differing Opinions on how to Advocate For Loved One

Kristina: It can be really difficult. I have always been very outspoken when I see something I think needs to change. I know not everybody will agree with the things I do and the way I do things.

Andrea: My role within this situation was to ensure I could do everything within my power to make sure my husband was there to walk our daughters down the aisle at their weddings. I personalized it because I needed everyone to view him as a human being and not a statistic. It succinctly defined what my role was. It pretty much kept the negative comments at bay after that.

Denise: I had to come to terms with my role was offering suggestions to [my dad], sharing the information and research I had discovered and letting him decide what he wanted to do. Whatever his answer was, I accepted it and moved on. That was very important to me. That way we stay on the same team.

Kristina: Sometimes, we have to take a step back and say while we are the ones advocating for our loved ones we can not take their whole say away. There are a lot of choices still that need to be made by the person themselves.

 

How to Decide What and How Much to Share

Kristina: It was always very important to talk to my husband because I knew mental illness has a lot of stigma attached to it and I needed to know what was he would be comfortable with me sharing with a wider audience. Those discussions took and take place regularly because things change. There always has to be this communication between us so I don’t overshare.

Denise: My bloggers bolster that as well. Some times caregivers log under an anonymous name, not necessarily share all of their information and what I find is, the discomfort eases over time as they get used to writing and the support they receive. Those first few blog posts are so nerve-wracking. Ultimately, people come to the place where they say it is good to talk about this because it does help someone else.

Andrea: [My husband and I] talk to our children to make sure. We never use their actual names. As long as there is an honest conversation when it can happen with the people you’re talking about, I think it’s fine. Where there is a great opportunity is for the situation Kristina is in with mental illness, with such a stigma attached. For her to lift the veil and talk about that in a meaningful way that people can connect with it really offers a way to raise awareness.

 

Advice For Someone Just Starting To Advocate

Denise: Give yourself time to sit with a blog post and get comfortable with it. Once you get used to it, it’s almost as though you feel you are out there in the world naked, you’ve just completely exposed yourself. It becomes this cathartic experience that you just write about without judgment of what can happen. It can be a truly valuable coping mechanism during a really tough time.

Kristina: There is no wrong way to do this. Find what you are comfortable with, what works for you, for the person you are advocating for and share you story. It is your story. Nobody can share your story the way you can.

Andrea: People have to feel comfortable having [the blog] feel like them. I think it feels a little more authentic if it reflects how you would be in real life.

Denise: Don’t minimize your story. It is important to you. That’s what matters. It’s an incredible record of what happened to you and someone who is important to you. I would encourage you to use video to journal about the experience. Think about other ways to capture what the moments and experiences are like because they will really become treasures for you.

 

Programs, Tools and Resources for Caregivers

Denise: I’m hoping to create a way for family caregivers to connect with each other while they are waiting – for news, diagnosis, in the hospital, in the doctor’s office. There is all of this time you spend waiting alone. So we would like to have a mobile app which connects all these family caregivers while they are waiting so they can use the time to connect, get support, talk to each other, perhaps gain a little information about what they are waiting for, watch a video, so the time doesn’t not become wasted and wasted with anxiety but really a nice way to keep connected with others who understand.

Andrea: There are great opportunities for cancer patients to get maid service and meals delivered. I think that’s great but caregivers need those services as well. For caregivers to be able to tap into those services just as easily as the patients would be a great paradigm shift for those of us who are trying to manage households and health crises at the same time.

Kristina: There are a lot of resources and the problem is finding them, especially while you are in crisis mode.

Denise: We have a great knowledge base yet we do not tap into it so I’m trying to build a care squad. It is a volunteer-based group. The care squad goes to the home, meets with the family caregiver and says here are some suggestions for you. The care squad stays involved throughout that caregiving experience. At the end of caregiving, the care squad helps the family caregiver transition.

 

The Health Activists who participated in Monday’s roundtable hail from different backgrounds and as such their stories are diverse. However, the thread which connects them and resonated with me was their passion and commitment to their loved ones in the role as caregivers. In addition, they were forthcoming as they shared their experiences and readily offered suggestions for those about to embark on similar journeys. Andrea, Kristina and Denise, thank you for your contribution.

 

 

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August 8th, 2012

Featuring Caregivers: Andrea Clay of CCA

by Leora

Continuing on with the theme of featured caregivers, I would like to move onto Spousal Caregivers. Spousal Caregivers are a unique group because the bond that a couple shares between one another is much different than the reliance that is held between other caregiving relationships. Andrea Clay, a spousal caregiver for her husband and a caregiver for her mother, gave me her input on being a caregiver. She is also the National Partnership and Strategy Director for the Colon Cancer Alliance, an important organization spreading awareness for Colon Cancer, supporting patients and families’, and educating and advocating for research. Fueled by her passion for helping other families that are affected by colon and rectal cancer, Andrea is an inspiration for other caregivers.

 

What got you involved with your Health Activism? Tell us your Health Activist story.

 

In 2004, my husband was diagnosed with stage III rectal cancer. I have always been the kind of person who volunteers to help anyone in need but it was still a shock to find out my very healthy 43 year old husband was seriously ill and needed extensive treatment. In a rather ironic twist, his father was diagnosed with colon cancer during the same week. Talk about a tough week! Once we received the diagnosis, I was determined to put together the best team of experts to treat my husband. I called a friend who happened to be an oncology nurse and asked for recommendations for all of the specialists we needed. I wanted the best doctor with the best bedside manner. My husband was more interested in the best doctor but came to appreciate bedside manner when he had to see doctors weekly for months on end. After a grueling 18 months of chemotherapy, radiation and surgeries, my husband was declared cancer free.

Since then, our family has faced other health issues such as heart conditions including a serious heart issue with our 14 year old, multiple other cancer diagnoses for my father in law, kidney failure and eventual transplant for my brother and more ordinary issues such as braces for teenagers. My mother now lives with us, so I am officially a member of the sandwich generation–kids still at home and a live-in parent. She is still very independent but I have been her health advocate during a hospitalization and follow up care. On the bright side, I work for a leading patient advocacy organization, so I can look at all of my cancer experience and be proud that I can use my knowledge and passion to help other families facing colon and rectal cancer.

 

This month we’re focusing on advocating for another – what are some of the main challenges members of your caregiving community face?

 

Caregivers typically put someone else’s needs ahead of their own. While this is needed on a temporary basis, many caregivers fall into this trap and stay there for a number of years. If we do not take care of ourselves, we cannot take care of anyone else. Caregivers are also largely ignored by the medical community. A team of people surround the patient with support and inquire about their physical, mental and emotional health (hopefully) while the caregiver sits in the corner all alone (literally). Sometimes caregivers perform the role of amateur researcher and find themselves overwhelmed with information they have gathered. Many caregivers don’t want to scare or burden the patient with this information and need to make sure they have a close friend who can just listen to their fears and concerns without freaking out or trying to fix everything. While there are many other challenges facing caregivers, financial strain is felt by many caregivers. You hate to sound petty when someone is seriously ill but worrying about how to stay afloat can be the most stressful situation caregivers face. At our house, we used to say “cancer is enough” and when you add the pressures of everyday living to the mix, it can all feel overwhelming.

 

What are some tips you have for overcoming these challenges?

 

Ask for help early and often. People will offer to help–your job is to find a way to take advantage of it. We had folks lavish our kids with fun activities during my husband’s illness. The summer even though he was starting treatment it is still their favorite summer full of horseback riding, sleepovers, ice cream cones, etc. We had folks help us financially without asking. Christmas presents were purchased for the kids in order to ensure they had a wonderful holiday. Due to some food issues, instead of having folks deliver meals, we received grocery store gift cards. That was more helpful for our family since I viewed cooking every night as a hobby and it kept some normalcy in a chaotic time. I wish I had been smart enough to get help with the laundry. Keeping clean clothes in everyone’s dresser was hard during full days of doctor’s appointments.

 

Create a support system that works for you. I asked my tennis partners to limit their cancer questions to the first 5 minutes of our games so I could count on a cancer-free hour or two on the court. When I needed to communicate urgent information to our network of friends, I would call a friend who sent the email to our group. This helped eliminate repeating an update 20-30 times via phone. I would not return every call that we received. While everyone was well-meaning, not everyone needed to hear the information directly from me all the time. Finding a group of other caregivers is helpful since you can express your doubts and fears with a group who truly understands the challenges faced by caregivers. Most caregivers do not want to feel like they are burdening the patient and will not communicate potentially negative information.

 

Find an outlet–exercise, writing, painting, etc. to help you deal with your stress. I was not a role model on this specific point but had I taken a brisk walk every day, I would have been a better caregiver. I wrote on occasion but found it too hard to sustain and eventually gave up. I did try to have a night out with my girlfriends every month or so and we would do something fun–a movie (as long as no character was sick), dinner at an old favorite or shopping.

 

Trust your gut instincts. If you think something is wrong, say something. I might not have been well liked by the nursing staff at our hospital but I was well respected because I spoke up when something was wrong and worked with the team to solve the problem. We know our loved one best and if we think something is wrong, we are usually right. Everyone involved with treating the patient has good intentions but sometimes things get past them and caregivers need to speak up.

 

Let’s get a bit more specific with spousal caregiving. What are tips you recommend to other spousal caregivers? What are personal struggles that you had to overcome as a spousal caregiver?

 

Spousal caregivers face the unique challenge of keeping the marital relationship healthy while taking on the role of caregiver. When my husband was sick, he was concerned that we would relate as caregiver and patient rather than wife and husband. Sometimes a caregiver has to deliver bad news that a spouse would rather not deliver. This has to be considered as couples face a health challenge together. Other times,  a patient needs tough love to be motivated to tackle an issue head on and other times a patient needs the caregiver to back off and give some space.  All of these situations require tact and patience especially when the caregiver is also the spouse or partner of the patient. A few times, it might be necessary to state “this is your caregiver talking, not your spouse” in order to avoid causing harm to the marital relationship. Even in the midst of treatment, it is important for spouses to relate that way and while an official date night might be out of reach, spending a few minutes talking about regular life devoid of all health issues is important. Life marches on even with a health concern, so we all still have to participate in daily life to the extent we are able.

 

Balancing home life and caregiving can be difficult for anyone. The gutters still need to be cleaned and the car still needs an oil change every so often. If the patient was in charge of certain domestic responsibilities, couples need to have an honest discussion of how to get those chores done. The solution in some cases is to hire help but finances are not going to allow that in all instances. This is another opportunity to ask for the help you actually need. If someone offers to drive your spouse to a medical appointment but you really need someone to mow the grass, it might be time to ask if they can do something else. Caregivers need to assess how many things they can do and do them well. I decided that I could not be a the best mom and wife at the same time any time my husband was in the hospital. The kids and I made a list of who they would like to spend the night(s) with and I called friends until someone could take them. This allowed the kids to feel like they had some control and it allowed me to completely focus on the hospital stay.

 

Our family told every adult in our children’s lives (teachers, coaches, close friends, etc.) what was going on so that they could help keep an eye on our children. Caregivers have many demands on their time and attention and having other adults be on the lookout for any changes with the children can be helpful. This also led to people offering to help drive our children to various activities. My husband was not able to attend a school play, so a parent videotaped it and gave us a DVD to watch at home. This allowed my husband to enjoy it with our kids after the fact. A fun family memory was made and the kids don’t really remember that their dad was too sick to attend–they remember watching the play with him and laughing with him.

 

What else would you like members of our community to know about Colon Cancer Alliance and with caregiving?

 

The Colon Cancer Alliance (CCA) has a peer-to-peer support program called the Buddy Program which matches both patient/survivors and caregivers with someone in a similar situation. Offering that support to caregivers is somewhat rare but the CCA understands that a cancer diagnosis impacts the entire community and supporting the caregiver is just as important as supporting the patient. The CCA also has an online community devoted to anyone impacted by the disease. Caregivers take advantage of this to post questions and receive support online. Again, caregivers need a safe place to communicate their concerns and having an online community is another way to support them.

 

 

Any upcoming events/projects/plans that you’re excited about?

 

The CCA has a 5k series, the Undy 5000, which takes place around the country. Just over half of the participants are friends or family members of someone diagnosed with colon or rectal cancer. This event is a great way for caregivers to come out and meet others in their community. Public colon cancer events are hard to come by and the Undy is a fun day with a serious message. The Blue Note Fund is the CCA’s patient assistance program that gives out one time gifts of $300 to be used on ordinary household expenses

that can pile up during treatment.

 

For more information about the CCA, check out their website. Also, if you are interested in running, walking or watching an Undy 500, check out their Undy 500 website and see if the CCA is hosting a run near you! It is a great event that has in the past year raised more than half a million dollars!

 

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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.


 


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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 | Comment2 Comments »

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August 5th, 2011

First Friday: August Post Prompts

by Amanda

If you’re look for an idea for something to write about this month, swing back to this post and customize one of these prompts! Feel free to use anywhere on the web be it your blog, your Facebook, or in video form. And, as always, if you’re inspired by a prompt and try it out in your health community – drop us a note and we’ll help you promote!

 

  1. Share a story about a time you were cared for by someone else. How did that feel? What did you appreciate most and what was the most challenging part? What do you wish your carer knew at the time?
  2. When have you cared for someone else? What did you struggle with and how did you find support for yourself? What can patients offer caregivers to make their caring easier or more effective? Any tips to offer?
  3. Care Package Post. If you were to receive a care package in the mail tomorrow – what would love to find inside? If you’ve made someone else a care package – what did you include?
  4. Advocating advice. Advocating for yourself is hard – even when you know so much about living with your health condition firsthand. How can others advocate for conditions they don’t have? Is that ok? Write about what they should and should not do and how would you suggest they join your cause.
  5. Parenting vs. caregiving – is there a difference? Why does society differentiate between caregivers of the elderly and parents of young children. Are parents given enough credit? Check out this post for more on this topic and share your thoughts in a post, video, or discussion.

 

CategoryAdvocating for Others, August, caregiving, post prompts | Comment2 Comments »

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August 4th, 2011

Health Activists: Advocating for Others Webinar

by Amanda

This month we have a really special webinar planned that aligns perfectly with our theme Advocating for Others and is guaranteed to inspire you. For this live webinar, I will be joined by two amazing Health Activist parents who advocate every day for their children and the chronic conditions that have come into their family’s lives. A true testament to caregiving and passionate advocacy, these two women have made the journey from their child’s diagnosis to educating themselves to caregiving to invoking change in their lives and respective communities to teaming up with other parents and raising awareness. Their stories are different but their experiences will be valuable to anyone – whether you’re a caregiver, parent, friend, or a relative of someone living with health challenges. One of our panelists for the webinar, Marla M, is a Special Needs Health Activist who connects with other parents online through her community, Special Mom Entrepreneurs Club. She is also the author of “Jacob’s Journal – My Journey Home” and advocates for the Down Syndrome community. Our other panelist is Janeen Z, Food Allergy Parent and Health Activist who has shared so many wonderful tips with our community – everything from “going on vacation” with food allergies to involving the whole family and her personal struggles being a Food Allergy Parent.

Both our panelists will discuss how to go from addressing diagnosis to empowering yourself with information. There’s so much to talk about and they will share some important advice.

We’ll discuss how to:

  • educate yourself as a caregiver for your child
  • empower yourself to advocate for someone else
  • how to advocate for others as a caregiver
  • prepare yourself (and your child) for the outside world – school, other people, etc.
  • make a difference but stay healthy yourself
  • go from caregiver to  activist

Marla and Janeen will also be answering your questions in our live Q&A session. You can submit them live during the webinar or share them when you RSVP to attend.

I’m really excited to hear what they have to say. This is a webinar you won’t want to miss. Whether you like to hear the origin stories of how Health Activists got started with their advocacy (one of my favorite things!) or want tips for advocating as a caregiver and finding the support you need – there will be something for everyone.

 

Join us Monday, August 29th at 8pm ET and be sure to RSVP here and we’ll send you event details!


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