Tag Archives: caree

Links for the Caregiving Community

Posted by on March 31, 2016 under Caregiver Corner | Be the First to Comment

Caregiver Links

According to the National Alliance for Caregiving in collaboration with AARP “More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.” That’s a lot of people! The caregiving community needs all the support it can get, and with that we’d like to offer up some helpful links:

A Place for Mom – Senior Living Blog

A Place for Mom “Connects Families to Senior Care” but their blog is full of articles that anyone living wtih, caring for or even just interacting with a senior will find helpful.

Caregiver Action Network

From their About Us: “CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.”

Family Caregiver Alliance

“Family Caregiver Alliance is first and foremost a public voice for caregivers. Founded in the late 1970s, we were the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home. We illuminate the caregivers’ daily challenges to better the lives of caregivers nationally, provide them the assistance they need and deserve, and champion their cause through education, services, research and advocacy.”

National Alliance for Caregiving

“Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues.”

Our Parents – Care Topics

Our Parents is “a free and unbiased service focused on helping families with aging parents find the best senior care solution that meets their loved one’s unique needs, be it an in-home caregiver, an assisted living facility, or a nursing home.” Their Care Topics page contains many great articles about senior care, along with links to the #ElderCareChat on Twitter.

Today’s Caregiver Magazine

This magazine operates as both a print magazine and an informative website. Today’s Caregiver is “a leading provider of information, support and guidance for family and professional caregivers.”

Caregiving Blogs – February 2016 Highlight

Posted by on February 23, 2016 under Caregiver Corner | Be the First to Comment

Caregiver Blog

We have some great caregiving blogs to share with you this month. They’re diverse and each of them is relatable in its own way. And all of them is trying to help out those who may be affected by their diagnosis or provide information in general.

Swallow, My Sunshine

Swallow My Sunshine should be read from the beginning. This blog is written from the perspective of a mom with a daughter whose diagnosis took years to fully determine. The daughter is well now, but there are some scary moments when reading through the past posts. And the author, Debi Lewis, has a wonderful writing style – and she hasn’t even written up to the present day. She takes you on the journey from her medically complex infant who had heart surgery at 13 months, to her now 10-year-old daughter who is living for the first time without medical intervention.

Sharing My Life with Lewy Body Dementia

This blog has a very interesting perspective. It’s written by a man, “Silverfox,” who has Lewy Body Dementia, or LBD. He writes about his difficulties with the nighttime, with having the television on, with keeping his sense of self alive. It can be a depressing read, but at the same time it’s refreshing to learn more about someone who has faced the facts and is simply moving forward.

Huffington Post – Post 50

The Huffington Post is a very popular website – but did you know there’s a section for readers over 50? This “Post 50” section discusses issues relevant to adults in middle age and beyond. The majority of family caregivers are women over 50, and so these articles may just be the right mix. Today, for instance, the top three stories are about dating in middle age, how to find self-identity after the loss of a spouse, and an author’s decision to stop drinking. Keep in mind that it’s still part of the Huffington Post, and so there is a lot of “click-bait” happening, or sensational article titles that attempt to lure readers in. But overall, the articles are thoughtful and interesting.

Caregiving Blogs – January Highlight

Posted by on January 14, 2016 under Caregiver Corner | Be the First to Comment

Caregiver Blog - January Highlight

It’s a new year! Is one of your resolutions to read more? Blogs are a great way to connect to your community and get inspiration. Check out these blogs and sites that provide wonderful stories from various contributing authors:

BLOOM
BLOOM is a Canadian site that is more than just a blog. It’s a magazine, blog, e-letter and speaker series that speaks to parents and caregivers of children with special needs. The new stream of content is fairly steady because those parents and caregivers are often the ones creating the blog posts.

The MIGHTY
There has been some controversy about The Mighty (see The Cute Syndrome’s blog post for more information about the special needs community’s complaints), but clearly its 80 million readers must find it intriguing. This site gives a voice to those living with disabilities, disease or mental illness, and their caregivers.

alz.org|blog
Another platform for caregivers, but this site also publishes contributions from those who have Alzheimer’s Disease themselves. It also provides news about the latest Alzheimer’s research, along with keeping the community up-to-date on fundraisers and studies. While the site is sometimes updated as little as once per month, there is a huge amount of information and a backlog of great blog posts.

Caregiving Blogs – December Highlight

Posted by on December 3, 2015 under Caregiver Corner | Be the First to Comment

Caregiving Blogs - December Highlight

As the holidays make everyone busier, it’s hard to find time to just settle in and read a few great blogs. But blogs can be the perfect length to read during a quiet breakfast, or during your public transit commute. Let’s take a look at a few of the blogs we’ve been reading lately:

Fifty Shades of Dementia
This blog is written by two British sisters about their parents, both of whom have had dementia for the past several years. Their mother just passed away in September, which they wrote about in a beautiful post. They manage to add humor into their posts, along with giving good advice while chronicling their journey.

The Cute Syndrome
Hillary is the mom and caregiver to Esmé, a four-year-old medically complex child. The title of this blog comes from Hillary discussing Ezzy’s condition with a friend, and how the doctors were telling her that her daughter had a syndrome. “Yeah, a cute syndrome,” came the response from her friend. Thus was born not only the name of the blog, but also the foundation to help children like Esmé.

Working Daughter
This site is not only a blog, it’s a community. The site is run by Liz O’Donnell, who has balanced being a caregiver with her other roles in her life. There’s lots of different resources on the site, and it is updated regularly.

Caregiving Blogs – October Highlight

Posted by on October 8, 2015 under Caregiver Corner | Be the First to Comment

Caregiver Blog - October Highlight

As we get further into fall, we thought it might be a nice idea to highlight a few blogs that you can bookmark to read as you settle into your favorite comfy chair with a mug of cocoa.

Noah’s Dad
Noah’s parents were surprised when their son was born with Down’s Syndrome. Noah’s dad, Rick, immediately started journaling their story. The blog is full of positivity and super-cute pictures of Noah. There’s lots of advice available for parents of children with Down’s Syndrome, other children with special needs and typical children.

Geriatric OT
This post hasn’t been updated in quite some time, but it still is a great resource for anyone looking for information about how to improve the lives of geriatrics, especially those with disabilities. There are lots of links to sites with great therapeutic suggestions.

Gastroparesis Crusader
Trisha Bundy describes herself as, “a proud mother, teacher, Gastroparesis Advocate, GJ Tubie.” Hers is less a caregiving blog and more of blog from a caree point-of-view. Even with the invisible illnesses Trisha struggles with, she maintains a positive attitude and her writing is very creative.

Conflicts in Caregiving: Self-Awareness

Posted by on September 17, 2015 under Caregiver Corner | Be the First to Comment

Conflicts in Caregiving Self-Awareness

One of the many conflicts that can arise when caregiving for an older adult is how self-aware they are. How much do they feel they are capable of versus how much they are capable of?

My friend had grandparents who were in their 80s and doing alright for themselves, but definitely not heeding what their bodies were telling them. The grandfather insisted on getting up on the roof and cleaning the gutters – until his children convinced him not to (mostly by doing it themselves). This was part of what led to a larger discussion about whether or not owning a house was still a good idea for them. They had much more space than they needed, but the couple still enjoyed owning a home. This argument continued in the family for months, before the grandfather slipped on the front step while it was covered in ice and broke his hip.

At that point, the grandparents agreed that perhaps it was time to move into an assisted living facility. And they love it. The complex is large and has several different levels of care. They’re in the lowest level of assistance and have complete independence. This complex even has a few guest rooms where family members can stay for free when they visit.

Unfortunately, sometimes it takes a tragedy to open the eyes of a senior, to help them realize that while they may feel and act young at heart (and they should!) they do need to understand their limits. A time of crises is not when you want to be making life-changing decisions. If possible, gently, and without any specific timelines, speak to your senior about what their plans are when they are not as capable as they currently are. If you approach the topic with love, they may just listen.

Conflicts in Caregiving: In-Laws

Posted by on July 30, 2015 under Caregiver Corner | Be the First to Comment

Caregiver parents

Today is actually National Father-In-Law Day. Do you have father-in-law that you love? Are you currently caring for one of your parents-in-law? Helping to care for the person or persons who raised your spouse, welcomed you into their family and have been a wonderful grandparents can be the perfect way to give back and help. But sometimes conflicts can arise from helping those outside of your immediate family.

Oftentimes, a married couple will be a team, helping to take care of one or another’s parents. But depending on careers, personalities and traditional roles, the wife can be the one more likely to end up caring for her husband’s parents. And that in turn can lead to resentment. What can be done to help with couples make the best of these situations?

All caregivers should know that some people take to caregiving better than others. Caregiving is not for everyone. Each spouse needs to be aware of this and try to determine if they are capable of providing care for an elderly parent. If they discover that the work is more than hard (all caregivers, even if they love their role, find the work hard) but is making them miserable for a variety of reasons, they need to have an open discussion about that with their spouse, and the other spouse needs to respect their feelings on providing care.

If one spouse is determined to be able to care better for the elderly parents, and agrees to do so, the other spouse needs to be extremely supportive to them. Keep this mantra in mind: If you can’t BE a caregiver, SUPPORT a caregiver.

Social Wellness Month

Posted by on July 16, 2015 under Caregiver Corner | Be the First to Comment

Taking time for yourself

July is Social Wellness Month, a month where everyone is encouraged to nurture their relationships with friends and focus on taking care of themselves.

So what does this mean for busy caregivers, who can barely find time as it is? Here are some tips for sneaking in some time for yourself and time to spend with friends, among all the demands on your time:

  • Buy some plants and water them while doing other things
    Plants can bring new life into a house and make things a little more vibrant. But watering them can be a pain to remember. Try combining two activities, like watering in the morning while brushing your teeth. This way you can watch the plants grow during the couple minutes of brushing time.
  • Chat during dinner
    The speaker mode on your phone can be a life-changer. Assuming you’re not eating anything too crunchy or slurpy, a very good friend likely won’t mind if you chat with them over a meal. Hopefully they’ll just be thankful that you found a few minutes to catch up with them.
  • Include your friends in your caregiving duties
    Do you take a stroll everyday with your caree, either walking or with them in a wheelchair? If not, you may want to try to add that to your routine – it can do wonders for both of you. And if you do, could you invite one of your friends to join you on that walk? And maybe stick around for an afternoon cup of coffee? Even if you only have time for a half-hour visit, don’t be afraid to ask a friend to drop by. They probably have been hoping they could, but don’t want to impose.

Even if you’re not able to fit these ideas into your busy schedule, try and focus on the fact that you need time for yourself and you are worth it. Even entertaining fantasies of doing things alone or with friends is better than getting stuck in the idea that everyday is crazy.

What will you be doing for Social Wellness Month?

Caregiver Blogs – July Highlight

Posted by on July 9, 2015 under Caregiver Corner | Be the First to Comment

Blogs written by caregivers

Wow! We’re already well into summer, but before it passes us by, we’d like to take another moment to highlight a few caregiver blogs that we’ve really been enjoying lately.

The Cute Syndrome
Hillary Savoy decided to call her blog “The Cute Syndrome” because while she was discussing her daughter’s un-diagnosed genetic disorders and various syndromes with a friend, the friend commented, “yeah, she has a syndrome. A cute syndrome.” And the pictures of Esme on this blog are really very cute. Hilary has also written a book about her journey with Esme through the world of genetic testing that is available through her site.

The Purple Jacket
This blog is written by Chris MacLellan, AKA, The Bow Tie Guy. Chris was a caregiver of his partner, Richard, until Richard passed away in 2014. Now Chris helps advocate for caregivers. The story of him caring for Richard during his last days was told in the Sun Sentinel newspaper and has been nominated for a Pulitzer Prize.

Chasing Rainbows
Kate Leong’s tale is one of both sadness and hope. Her first child, Gavin, was born with some disabilities, exacerbated by bouts with both Botulism and Respiratory Syncitial Virus (RSV) while he was still under six months  of age. Kate continued to write about Gavin and the therapy he received for his special needs, along with his younger brother, Brian – until Gavin’s death in 2013. Since then, Kate’s blog has focused on the grief and happiness that has come with her son’s death, and her new daughter Hope. While her current story is just as compelling as her past, her older blog posts about Gavin’s therapy may be helpful for those with special needs children of their own.

Caregiving Blogs – February Highlight

Posted by on February 10, 2015 under Caregiver Corner | Be the First to Comment

Blogs written by caregivers

A new month is here and we’d once again like to take a look at blogs that show us the compassion and grace that caregivers give to their carees.

http://jbones1961.blogspot.com/
Jane is the mother of Nicole, who is 20 and has a congenital heart defect and pulmonary arterial hypertension. She’s been writing for four years about her journey with Nicole, Nicole’s health issues and their life together. Recently, she started on a series where she remembers the days when Nicole was first receiving her diagnosis of pulmonary hypertension.

http://www.gavinowens.com/
It’s been over five years since Karen’s son, Gavin, passed away, but Karen and her husband, Adam, continue to give their lives to helping children with special needs. They’ve adopted three special needs children since Gavin’s death, with issues that vary from cerebral palsy to feeding tubes. While Karen hasn’t updated the blog recently, it’s full of lots of amazing stories about their journey as a family.

http://www.intentionalcaregiver.com/
Shelley Webb is a RN and has been a caregiver. She is the “Intentional Caregiver” of her site, which is much more than just a personal blog. It provides care to the caregivers and gives lots of advice. Shelley has other authors that contribute to the site, and has an extensive question section with lots of tips about how to handle various caregiver situations.

Do you have a caregiving blog that you’d like us to highlight? Let us know in the comments!