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National Family Caregivers Month

Gifts We’re Loving

The holidays are coming so we’ve put together a gift guide for things the caregiver or the care recipient in your life will really want. Show the ones in your life you love them with thoughtful tokens of appreciation – even something as simple as a card can brighten someone’s day!

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National Family Caregivers Month

5 Questions w/ Lori La Bey (Alzheimer’s Speaks)

Lori La Bey is located in the U.S., but is known globally when it comes to dementia care. Her mother lived with dementia for 30 years, and Lori created Alzheimer’s Speaks and Dementia Map to honor her with the mission to shift dementia care from crisis to comfort worldwide.

1. Who do you care for (now and/or in the past)? What is your role/relationship?

I cared for both my dad who passed away from brain cancer in 2001, and my mother who died from dementia after living with it for 30 years, in 2014.

2. When did you start to realize you were a caregiver?

With my mom, it was a slow process, assisting her as my father was her primary care partner. It was very natural and just something a daughter does for her parents. 

With my dad’s cancer, it hit quick. Everything changed with one phone call. We had to pick my folks up at their cabin and bring my dad down to the Twin Cities for emergency surgery. The hospital got him set up in a room and allowed us to celebrate Christmas with him for two days, before they did the surgery. They didn’t know if he would survive. From this point forward, nothing in my life was the same. Dad pulled through the surgery and actually did well for about 4 ½ years, but mom’s needs increased; so I had to step up and step in to support my dad and mother. 

3. What helps you when you’re feeling overwhelmed by your caregiving responsibilities? What advice would you give to family caregivers in this situation?

My spirituality helped me a lot. I hate to say that in the beginning of the journey, I saw friends trying to help more like another thing I had to coordinate, communicate, and oversee. Boy, was that a mistake! I didn’t realize how much I missed my friends. I didn’t figure that out until one day I broke down and took time to be with my friends. Actually, I met them to get them off my back. But then the magic happened. We laughed and cried together. I felt normal again. I found I could care better when my soul was full. 

I had gotten so task-oriented doing everything for everyone else, because I didn’t feel there was time for me. I felt that would be selfish of myself. I learned that to be a healthy care partner, I needed to take care of me, too.

4. What is the one thing you know now that you would tell new family caregivers?

  • Be just as patient and loving with yourself as you are with others.  
  • Don’t let your inner critic run you down.
  • Focus on whether the person you are caring for is first: safe, happy, and pain-free. Then do your tasks. You will find you are more compassionate, less stressed, and will get the job done in a better fashion.

5. How has caregiving changed you?

Caregiving has changed my life forever. It’s made me realize we all have the power to care better, to change the system, and to assist others on the same journey. I quit my job to shift dementia care from crisis to comfort. I advocate for dementia via my company www.AlzheimersSpeaks.com, which raises all voices around the world, including those living with a form of dementia. We have a radio show, blog, and a variety of videos from Dementia Chats highlighting those living with dementia, plus Dementia Quick Tips (things I wish someone had told me). I also partnered with David Wiederrich to launch www.DementiaMap.com, which is a global resource directory free to the public, as well  as offering free and economical plans to those who have services, products, and tools to share. We feel strongly that budget should not limit access to those in need.

Click here for a downloadable brochure on Helpful Tips for Dealing with Dementia, courtesy of Alzheimer’s Speaks and Dementia Map.

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National Family Caregivers Month

Movies We’re Loving

Movies can be a great escape, or they can help us see ourselves and know we’re not alone in our journey. In no particular order, here are some movies that enlightened us, showed us the full spectrum of caregiving and made us feel more connected. Great for a rainy day or cozy evening at home!
The Father

A man refuses all assistance from his daughter as he ages. As he tries to make sense of his changing circumstances, he begins to doubt his loved ones, his own mind and even the fabric of his reality.

Supernova

Sam and Tusker are traveling across England in their old RV to visit friends, family and places from their past. Since Tusker was diagnosed with dementia two years ago, their time together is the most important thing they have.

The Upside

A comedic look at the relationship between a wealthy man with quadriplegia and an unemployed man with a criminal record who's hired to help him.

Beginners

A young man is rocked by two announcements from his elderly father: that he has terminal cancer and that he has a young male lover.

The Savages

A sister and brother face the realities of familial responsibility as they begin to care for their ailing father.

Amour

Georges and Anne are an octogenarian couple. They are cultivated, retired music teachers. Their daughter, also a musician, lives in Britain with her family. One day, Anne has a stroke, and the couple's bond of love is severely tested.

Still Alice

A linguistics professor and her family find their bonds tested when she is diagnosed with Alzheimer's Disease.

The Fundamentals of Caring

A man suffering a family loss enrolls in a class about caregiving that changes his perspective on life.

Me Before You

A girl in a small town forms an unlikely bond with a recently-paralyzed man she's taking care of.

Crip Camp

Down the road from Woodstock, a revolution blossomed at a ramshackle summer camp for teenagers with disabilities, transforming their lives and igniting a landmark movement.

It's Not a Burden

The humor and heartache of raising elderly parents

Sky Blossom

An inspiring film about today's students taking care of family with disabilities across America.

Caregiver: A Love Story

The tale of one man struggling to care for his dying wife. This film highlights an essential, yet largely unseen workforce—the family caregivers of America, and challenges viewers to acknowledge the growing strain placed on them.

CARE

A documentary. Care work is essential work. It's time for respect and a living wage.

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National Family Caregivers Month

Hands Off the Popcorn

“Hands off the popcorn,” I urgently declared.

It was a favorite joke between us. “Hands off the popcorn” meant I was done for the day. No more taking kids to school, extra-curricular activities, dinner, the inevitable long process of putting our toddler to bed; her demands for one more glass of water, one more book, one more song. Making sure the teenager came home on time and did her homework. And always in the background, what it took to live with Joanne’s illness, her slowly deteriorating body.

Most days, we were joyful in a way I’d never experienced. She had insisted we wouldn’t do this alone and I had become accustomed over time to the steady stream of helpers. I had learned to say “thank you” instead of “are you sure you have time?” Somehow, without my even realizing it, I had learned to take care of myself, to answer the call for time or rest or just a simple five-minute break. I had learned to stay up to date with me.

But not on popcorn days. Those were the days someone cancelled, or a child was sick, or I hadn’t slept well. And, in her wisdom (or maybe simply her endless love for me) she didn’t take it personally; she simply smiled that knowing smile and waited for me to do whatever it was I needed to do until I was ready to carry on again with the rich and lovely life we’d created out of the rubble of her broken bones.

She reached out a hand, playfully feigning a steal of the kernels, poised above my bowl. She lingered over a particularly buttery bite, and I shooed her hand away, her fingers flies buzzing around my treat. I was going to eat the entire bowl. Myself. I was not going to share. And I was going to enjoy Every. Single. Morsel. Even if I was full.

Right from the start she set the stage for me to discover what it felt like when I needed a “selfish” moment.  “You’re not doing it all yourself. I need you to be my lover, my beloved. If you are busy doing everything you won’t have the time or energy for that. And you’re the only one who can do that!

I finished the last bite of popcorn, savoring the taste on my tongue. As we prepared to sleep, to start fresh the next day, that bowl of popcorn had been just what I needed. I had been my own priority, however briefly, and I felt better for it.

I reached over and took Joanne in my arms, ready to be generous with a goodnight hug and kiss. She answered my invitation with an enveloping set of arms taking me in, open to whatever I had to give. When I answered the deep call for my own attention, I had so much more to give!

Cheryl Espinosa Jones (CA MFT#27876) is a grief counselor, educator, writer, and the host of Good Grief, a weekly radio show investigating loss, grief, and transformation. Her novel, An Ocean Between Them, describes a mother-daughter relationship struggling to heal after a cancer diagnosis. The heart of Cheryl’s work stems from the 10 years she supported her wife while she lived with cancer and Cheryl’s immersion into her own grief after her wife’s death, surprised by frequent moments of joy.

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National Family Caregivers Month

5 Questions with The Caregiver Coach, Benita Hampton

Benita Hampton, a Certified Dementia Practitioner and Caregiver Coach with a specialization in Aging & Dementia Education, is the founder and host of The Caregiver Coach podcast. During the span of her career, Benita has taught many workshops on the topics of aging and dementia, particularly, sundowning, dementia-related behavioral issues, and healthcare planning. Benita’s debut book, “Mama’s Got Dementia, Daddy’s Gone Crazy…and I’m Not Far Behind” is currently in the works and is scheduled for publishing by mid-next year. 

1. Who do you care for (now and/or in the past)? What is your role/relationship?

My mom and I cared for my grandma after she was diagnosed with dementia, over 20 years ago, and I credit that caregiver journey as the catalyst that pushed me forward to work in senior care, then become a caregiver coach. Back then, there was virtually no such thing as a coach or advocate in the caregiver support space and I watched the physical and emotional toll that caring for grandma took on my mom. It was then that I resolved to do all that I could to become a resource to others that found themselves thrust into their own caregiver journey. I also had the honor to care for both of my parents at the end of their lives, and I feel that the experience of caring for an aging parent just strengthened my resolve to support other caregivers.

2. When did you start to realize you were a caregiver?

When I am teaching a workshop I often ask the attendees to raise their hand if they ever looked into their parents’ eyes as a child and said, “I love you so much, I can’t wait until you grow old and can no longer care for yourself. I will find the best living accommodations for you when that time comes.” After 17 years of my career as a caregiver coach and an aging & dementia educator, I have yet to ever have an attendee or client say, “Yes! I’ve said that!” I think that caregiving is something that can just sneak up on you. It’s not always something that you plan for, and it’s certainly not something that you ever feel well prepared for. My personal caregiving journey is no exception. I did what so many other family caregivers have had to do, I saw that my loved one had a need and I just started providing care, while learning (through trial and error) along the way. It was something that just continued to evolve until one day I realized that I was a caregiver.

3. What helps you when you’re feeling overwhelmed by your caregiving responsibilities? What advice would you give to family caregivers in this situation?

I am very passionate about ensuring that caregivers create a plan of care for themselves. Whether you call it a respite care plan, an escape plan or something else, I believe that every caregiver needs to have this in place, and then make sure it’s followed. Every situation is different, maybe a family member can step in and provide regular breaks, maybe a professional caregiving agency can assist with providing care so that the caregiver can seek respite. Providing care for a loved one comes with a high risk of caregiver burnout, creating a respite plan of care for yourself will go a long way to help avoid the dangers of burnout.

4. What is the one thing you know now that you would tell new family caregivers?

In my coaching practice, we have a saying: “Stay Bendy” It’s how we remind ourselves and each other to stay flexible. The dynamics of caring for an aging loved one are constantly changing. What worked for you on Monday, might not work on Tuesday. Give yourself permission to stay flexible and breathe through the changes. 

5. How has caregiving changed you?

My caregiving journey has changed my life. Caring for my grandma, all those years ago, caused me to choose my career path and to serve in the caregiver support space. In the introduction to my podcast I talk about both the messy and the magical parts of being a caregiver to someone you love, and I believe that. Some days are messy, some days are magical, most days are hard. Caregiving has taught me flexibility, patience, gratitude and to celebrate the small victories. Caring for my parents taught me the importance of advocating for your loved one; to be brave enough to have conversations that matter; and that you can experience peace of mind that surpasses understanding when you know that you are carrying out your loved one’s wishes during their final days.  Caregiving is tough stuff, but you can still find joy in the journey, and it’s a journey that will change your life.

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National Family Caregivers Month

Boundaries Before Burnout: Caring for Yourself in the Thick of Caregiving

When my husband—debilitated, immunocompromised, blind, and unable to walk—was discharged after a devastating bone marrow transplant, his doctor told me he couldn’t be left alone even for a minute. I’ll never forget my terror and outrage; I spluttered out something like, “I can’t do that! I have kids! I have to…sleep!”

I didn’t realize it then, but just by saying “I can’t,” I was setting a boundary in the face of an impossible demand. I wish I’d advocated for myself so clearly in the face of other expectations that were slightly less unreasonable than solo 24/7 care. I often let the intensity of my husband’s needs pull me into managing his care and its attendant paperwork, phone calls, and logistical demands for such long hours that I reached a stressed-out, exhausted breaking point.

From that experience, I learned how important it was to set boundaries before I got burned out. Setting limits can be one of the hardest things for dedicated caregivers to do—especially for women, as many of us are socialized to give of ourselves endlessly. Saying no or taking a break from caring can prompt guilt, and it’s tough both to find respite care and to trust others with a fragile loved one.

Training a consistent respite service, however, is an investment in future breaks that will protect your mental health and make long caregiving sustainable. In the case of my husband’s 24-hour care needs, we were fortunate that we could dip into savings and hire home attendants for a short time. Many community organizations offer respite care services (now becoming more available after COVID concerns halted them), and friends and family may also pitch in, especially if you make specific requests. However you find relief, drawing clear lines about how much you can handle is a crucial step in surviving your caregiving journey—and maybe even thriving in it.

Kate Washington is the author of Already Toast: Caregiving and Burnout In America (Beacon Press, 2021) and a speaker on the systemic challenges facing family caregivers. Her writing has appeared in The New York Times, TIME, Eater, Catapult, and many other publications. She holds a Ph.D. in Victorian literature from Stanford University and lives in Sacramento with her husband and two daughters. Connect with her at kawashington.com or on Twitter @washingtonkate

 

If you’re in need of respite care or services to support you in your caregiving responsibilities, here are some resources that may help:

ARCH National Respite Network

Eldercare Locator

National Adult Day Services Association

National Institute on Aging

 

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National Family Caregivers Month

Spotlight on BJ Miller, President and Counselor at Mettle Health: “Difficult Aspects of Caregiving”

Originally published on Medium

There’s this thing where people call caregivers “angels” and such and that can be this over-hyped putting-people-on-a-pedestal thing is problematic in a lot of ways because we all need to be caregivers. Don’t immortalize someone for thinking or caring about another human being because we should all be doing that. It’s also mundane, hard work, it’s not heroism.

 

Checking yourself, introspection and self-awareness are a huge piece of doing this as well. Check in with your gut; are you helping or hurting this situation?

 

The Bodily Tasks of Caregiving

We are back to this idea that caregivers are “angels.” Well, they’re actually just human beings. You get to be grossed out, you get to not want to do it, and you also get to have help if you need it.

 

This is a big thing that keeps folks from really getting into caregiving, oftentimes it’s seeing someone else go through all this brings up their own fears about illness or death, so there can be a lot to process and a lot to work through.

 

We have to get over this idea that “normal” people are independent and invulnerable and only those poor pitiful sick people need help. We all need help, all the time and this is natural. This is normal.

 

But just because helping someone or needing help is natural and normal doesn’t mean it’s not also hard or disgusting sometimes. There is nothing wrong with being grossed out. The trick is to try to find a way to stay. If you can’t stay, maybe you just need to find a way to get help.

 

If you’re on the receiving end of caregiving, it can become a little demoralizing at some point. The times I’ve been a patient, it’s good for me when I know my friends, family, doctors, nurses, or anyone else is learning something or gaining something from my situation. So, look out for lessons learned and anything that can add enrichment to your own life to go along with the hard stuff.

 

You care for your person and you care for yourself and you care for the good of humans. I wish more people had this idea to just be a good neighbor.

 

There is an activism to caregiving. There can be some pride and a lot of importance in it too. Life can be incredibly unfair, right up until love comes in at the end in the form of caregiving. There’s a sense of justice until the end and can make sense of a life that would have otherwise been so hard.

 

For more from BJ, check out the video series The Mechanics of Caregiving with BJ Miller

 

Dr. BJ Miller is a longtime hospice & palliative medicine physician and educator who has worked in all settings of care: hospital, clinic, residential facility, and home. He has been profiled in The New York Times Magazine, and interviewed on Super Soul Sunday, The Tim Ferriss Show, On Being with Krista Tippett, and has spoken at the Aspen Ideas Festival and around the world. BJ’s latest project, Mettle Health, aims to provide personalized, holistic consultations for any patient, caregiver or clinician who need help navigating the practical, emotional and existential issues that come with serious illness and disability. He also co-authored the book, A Beginner’s Guide to the End, which was released in 2019.

 

Republished with permission of the copyright.

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National Family Caregivers Month

Books We’re Loving

As many of us find ourselves in the unexpected role of caregiver, we turn to books to educate us, console us, and to remind us that we’re not on this journey alone. In no particular order, here are some staff picks that we’ve appreciated along the way.  

Already Toast

by Kate Washington

A Beginner’s Guide to the End

by BJ Miller, MD and Shoshana Berger

Toolkit for Caregivers

by Deidre Edwards

Lifted

by Roz Jones

The Unexpected Journey of Caring

by Donna Thomson and Zachary White

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National Family Caregivers Month

5 Questions with Rachel Donnelly

Rachel Donnelly is the Founder & CEO of Black Dress Consultants, where she helps manage end-of-life affairs so that individuals and families can stop wondering what they should be doing and get back to the things that matter.

Who do you care for (now and/or in the past)? What is your role/relationship?

I have cared for many members of my family in the past, including my grandmothers, father, mother and uncle. These loved ones have all since passed away and now I care for my amazing husband, son and daughter.

When did you start to realize you were a caregiver/end-of-life decision maker?

As a small-town doctor’s daughter, it was normal to be around those who were sick, aging or dying. I spent many days in my father’s office and accompanying him when he made house calls or rounds at the hospital. 

My caregiving journey officially began at age 13 when my father was diagnosed with cancer. Three years later, my mother, siblings and I had to make the difficult choice to discontinue life support and he passed away shortly after.

Unfortunately, years later, I had to make the same choice for my mother, which left my sister and me as the next-in-line caregiver for our uncle who was in the late stages of Parkinson’s Disease.

These circumstances forced me to grow up earlier than my peers and to make decisions around end-of-life that many have never considered so young. 

What helps you when you’re feeling overwhelmed by your caregiving/death/after loss responsibilities? What advice would you give to family caregivers in this situation?

There were countless times when I agonized over whether I was making the best decision for my loved ones. 

With each task and decision, I tried to remind myself that I was doing the best I could with the information and resources I had. Many times caregivers and family members are put in circumstances where they have to make decisions without knowing what their loved one would do or want. Sometimes, you just have to take a deep breath,  follow your gut and do the best you can.

I would encourage family caregivers to ask for help and when possible, outsource tasks to friends, family and/or professionals. You don’t and shouldn’t have to do this alone.

What is the one thing you know now that you would tell new family caregivers?

Do as much estate and legacy planning as possible NOW. And I’m not just referring to wills, power of attorney and advance care directives. These documents are crucial, but I also encourage family caregivers to document and preserve stories, traditions, photos, digital assets and other end-of-life wishes. 

How has caregiving/loss changed you?

While I jokingly refer to myself as a real-life Little Orphan Annie whose life should be subtitled “Death Becomes Her,” I realize now that my upbringing and experiences with caregiving, end-of-life and after loss led me to create something truly extraordinary, which is a business that I needed. Necessity is the mother of invention, right? 

I founded Black Dress Consultants to help family members and individuals manage the unavoidable logistics and administrative tasks of end-of-life. Every day, I wake up with a goal to help families grieve better, whether that is by making sure they’re more prepared beforehand or by taking tasks off their plate after a loss. 

Each phase of my life has been a learning experience, which I’ve tried to approach with laughter, knowing it truly is the best medicine.   

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National Family Caregivers Month

5 Questions with Roz Jones

In honor of National Family Caregivers Month, we spent time getting to know leaders who are making a difference in their community, and we want you to know them too. Roz Jones is a professional caregiver, coach, speaker and author based in Jacksonville, Florida. We highly recommend tuning in to her Clubhouse sessions or checking out her YouTube series!

1.    Who do you care for (now and/or in the past)? What is your role/relationship?

Currently I am a CNA [certified nursing assistant] who owns a Non-Medical Home Healthcare business. I do what I do to help the caregiver on their journey to reduce the S.O.S. on their journey. The relationship I have to my clients is a supportive companion for sharing stories, interests, and activities.

2.    When did you start to realize you were a caregiver?

I wasn’t even familiar with the term, to be honest. I didn’t understand the term until the nurse at the hospital told me I was giving great care to a patient who wasn’t related to me. The person I was advocating and caring for was a member of my church who asked me to go to the hospital with her while she was having surgery.

3.    What helps you when you’re feeling overwhelmed by your caregiving responsibilities?

I learned to speak new languages (hahaha). I also take naps.

I not only teach, but practice meditation in my club on Clubhouse. The club was initially a hobby for friends, but turned into a safe place for caregivers to discuss their needs for caregiving. And also self-care needs for themselves.

4.    What advice would you give to family caregivers in this situation?

Know and understand what you are saying YES to before you say YES. Be flexible and do your research on the diagnosis of the one you are taking care of to understand the accountability and responsibilities. Also, be honest when you are no longer able to provide care.

5.    What is the one thing you know now that you would tell new family caregivers?

It’s ok to say NO. It’s also ok to ask for help. Incredible things happen when you ask for help.

6.    How has caregiving changed you?

Having the spirit of service and nurturing.

Connect with Roz

Website: https://www.rozjonesent.com/

Blog: https://thecaregivercafe.net/ 

Facebook: https://www.facebook.com/jacksonvillesbestcaregivers/ 

Instagram: https://www.instagram.com/rozjonesenterprises/ 

YouTube: https://www.youtube.com/channel/UCDFP2FF5QBbjVyaphhh3zdA/videos?view=0&sort=p

Twitter: https://twitter.com/RozMarshallJon2 

LinkedIn: https://www.linkedin.com/in/rosalind-jones-4980867b/ 

Book: https://www.rozjonesent.com/lifted