Category Archives: Caring for the Caregiver

Take 15 to get SANE

UCG out in Oslo (1)

I am delighted to interview guests and produce my radio show. I also derive great pleasure from sharing my new bookThe Unexpected CaregiverHow to keep Mom & Dad safe, active, independent and yourself S.A.N.E. I write and speak on staying SANE while giving care because I know how important it is to remain balanced. Trying to care for someone else—especially family—can be calamitous if your internal messages are giving you bad advice. The SANE Method helps you get out of that emotional chaos and move into a balanced approach to giving care.

Now you can take fifteen minutes and learn a little about staying SANE. Teri Knight recently interviewed me on her weekly radio segment, “15 With the Author.” She asked me to start by reading the first paragraph of the Preface, written by Robert V. Taylor:

“Caregiving is a journey into the heart of the unexpected and the unknown. At its very worst it creates resentful caregivers or angry martyrs. At its finest it is an invitation into the depths of what it means to be human and shines a light on life that we could never have imagined.”

Robert’s words beautifully sum up the yin and yang of giving care. I invite you to take a small amount of time to listen to our upbeat conversation about how to use SANE to care for yourself while giving care to others.

I also encourage you to read my book and to remember to use the SANE Methodto help you tackle the highs and lows of caregiving. You, too, can experience the joy and fulfillment often found in providing care for family, loved ones and friends.

 

Feeling Appreciated…even during the holidays

If you ask some of my friends and family, they may tell you that I don’t like Christmas. That’s not true. What is true is that I’ve often felt let down at Christmas. Not because of the holiday itself, but, well, because it’s also my birthday. Celebrating my birthday always seems to be squeezed in between driving to the relatives and opening presents. Probably one of the most painful happy-birthday-christmas-bulbmemories I have is overhearing my grandma say to my sister, “Oh, I forgot Kari’s birthday. Grab a present from under the tree and we’ll put ‘Happy Birthday’ on it.”

When I started working on S.A.N.E.™ (Supported, Appreciated, Not Guilty and Energized) for family caregivers, I looked at aspects of my life outside of caregiving that would also benefit from my SANE Method™—Today I’m asking myself, “What can I appreciate about being born on Christmas Day?” Instead of expecting others to create a “happy day” for me, now I think of SANE™ and realize that feeling Appreciated is my responsibility.

How freeing it is to let go of expectations! Rather than planning my reaction to what doesn’t happen, I plan parts of the day and allow other parts to simply flow. Among other things, I appreciate that I’ve started a new tradition of birthday breakfast. French toast, bacon, coffee, and on the occasional year, a mimosa. It is that simple.

I came into this world at dinnertime on a cold Christmas Day and I took my time. Maybe that’s why it has taken me a while to learn how I can feel Appreciated on my own, from within. On this holiday season, I wish for you to find ways to Appreciate all that you do to create light in the dark winter. Know that feeling loved and Appreciated comes from within first, before it can be shared.

3 quick tips to re-energize yourself

Last night I heard my friend coughing all night. I’m concerned that she’s not taking care of herself as she splits her time between caring for her dad and her children. With each visit, I see more of her time being eaten up by the needs of others. Acquaintances say, “Oh you’re so good to your mother.” Yes, she is—but I also want her to be good to herself.

Caregivers feel drained. It’s a tiring and energy-robbing role. In the midst of feeling exhausted you must sneak in ways to regain necessary energy. Try these three suggestions:

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  1. Go for a quick walk around the block or into the woods. Breathe in the fresh air and imagine the oxygen filling up your brain.
  2. Crank up the music and dance. Both the physical movement and the energy of the music will give you energy. (My dad and I often break into random dance. As you can see in the picture, we enjoy!)
  3. Talk with someone about a fascinating book you’re reading. Get into it and share feelings and ideas and research even more about the topic.

You need energy to give care. You also need energy to enjoy the parts of your life that are not about being a caregiver.

How to beat the “Not-Enoughs”

“When will I see you again?” my Grandma Gladys would often ask as I was getting ready to leave. Instead of giving her a time and date I would answer with, “Well you know I’m awfully busy at college.” Part of that answer came out of frustration that my current visit didn’t seem to count. The other part was sheer ego. I wanted her to know that I was important and had a life. I rarely felt good after a visit that ended like that.

Was I doing enough? Could I have visited her more? I loved my grandma dearly, but had a lot of guilt about not doing “enough” for her. It’s hard to say what is enough and feelings of guilt only fuel your uncertainty.

guilt-1A simple way to beat the “Not Enoughs” is:

  1. Put yourself in a rational state of mind. (You may have to do math problems to move your brain from an emotional to a logical place. Try it. It works!)
  2. In that logical state, write down all that you do for your loved one. (Make no judgments as you write.)
  3. Stay in that unemotional place and look at your list.
  4. Ask yourself, “Could I do more? What would I do? How would it affect my life?”
  5. If it makes sense to do more, add in the time. If it doesn’t, look at your list again, but this time with a sense of gratitude for the time and energy you give.

Guilt will be a constant companion on our journeys as a caregiver, but you’re in control. Erase the guilt and embrace what you’re doing as enough.

Incredible Cost of Giving Care

There is a cost to caring for our parents and loved ones that goes beyond the financial. Our schedules are eaten up by hiring caregivers, going to doctor appointments, answering weepy phone calls, defending our need for time away. Instead of complaining outright, we complain in public restrooms to strangers or at lunch to our best friend, while woofing down a sandwich and surfing the net for assisted living options. We yell at our kids, forgo the workout at the gym, eat out of the vending machine, and ignore those activities that gave us so much joy. They’re our parents, after all! We must take care of them.

Why do we do it? Why do we put ourselves in the role of giving care to our parents or other family? Reach beyond the usual response of, “If I don’t do it, who will?”

In my recent radio show, author Katy Butler shares her caregiving story. Her touching and trying account of looking after both parents will cause you to think. As will Dak’s blog Dying Gone Haywire from 2013.

I understand the pull of wanting to do what we “should,” and needing to set boundaries. I’m here to help and want to hear from you.

Together We Can

88-year-old Betty finished the 3 1/2 hour rainy-day hike. It wasn’t something she did alone; the group walked along side her. With a walking stick in one hand, her grandson held the other. When the creek was too wide and rocky, our guide lifted Betty safely to the other side.

IMG_2927Even though some in our hiking group may have wanted to climb a peak or move more quickly, our personal desires easily gave way to the group’s goal of completing the hike as a whole. As individuals we may be preoccupied with our individual agendas, but allowing others to interrupt our preoccupations can be a sweet gift. We tune into someone else and we wake up to the present moment.

This is what it can be like to be a family caregiver. If we’re able to set aside our personal wants and tune into another person, it is a great gift to both care receiver and ourselves. When I completed Robert V. Taylor’s 21-Day Reboot, I found myself tuning both inward and also outward per his daily suggestions. When you listen to our radio interview, you will see just how helpful his 21-Day Reboot can be for family caregivers. Instead of being weighed down by daily tasks, embrace Robert’s Day 5 suggestion: “Delight affects how you participate in your own life and the world. Chose to allow yourself to be delighted by something or someone today. Tell another person about your delight.” Read more »

I don’t need training. I know my Mom

What do you do when your mom has Alzheimer’s disease, your father denies it, and your siblings are of no help? Caring for a parent with Alzheimer’s disease has a steep learning curve. Yet may family caregivers feel they “should” be able to handle it—No training needed. You must ask for help. Read what you can get your hands on. Attend support groups. Instead of arguing with someone who has Alzheimer’s disease, use my favorite phrase: “You may be right.” And walk away.

I recently interviewed Pam Brammann, who provides training for family caregivers. She shared with me brain brain images (PET scans). First you see a normal, active brain compared to an Alzheimer’s brain. You see very little activity in the diseased brain. The second set compares a normal infant’s brain to that of someone with late stage Alzheimer’s disease. It becomes clear just why you can’t reason with someone who has Alzheimer’s disease—their brain is working at the level of a 2-year-old.

Normal Brain vs Alzheimer's Brain Late Alzheimer's Brain vs Normal Infant's Brain

As Pam explained in our radio interview, “If a two-year-old runs across the street, you don’t sit that child down and elaborate the dangers of running across a street; the child won’t get it. Same goes for someone with Alzheimer’s disease.” Reasoning with someone who has Alzheimer’s disease or other dementias doesn’t make sense.

Even if you think you know your Mom or Dad, you may not understand how the disease has changed their brain. Getting a little training to better understand the disease and just how you can handle the symptoms (or behaviors) will do wonders to keep you sane.

Songs in my head

I think in song lyrics. I open my laptop and the words to a Bahamian lullaby pop out of my mouth: “All my files Lord, so-oon be open.” This just happens with me. And yet if you sit beside me in church when I have the words of a hymn in front of me, I’ll sing different words. My good friend Emily chuckles and says, “How can you get the notes so right and the words so wrong?”

Music has always been a part of my life. It’s something I can share during a presentation or at the bedside of a Hospice patient. When I worked in a dementia care community, I used song to greet the residents. Music can be used to shift moods, to acknowledge sadness, to release anger, to embrace happiness. As a family caregiver, you can use music to connect with your parents. Instead of listening to “their” music or “your music,” take turns. My dad and I dance to Madonna and Frankie Valli. Instead of telling your kids or grandkids to “turn off that noise,” engage with them. What is it about the beat, the words, the band that they enjoy?

IMG_2513More than just enjoyment, music can also be used to help someone who has suffered a stroke to relearn how to speak, a person with Parkinson’s disease to improve their posture and reduce pain, or a patient in Hospice to leave a song legacy. I welcomed back Melissa Hirokawa, M.M. MT-BC, Neurologic Music Therapy Fellow, on “The Unexpected Caregiver Radio Show,” where we focused on using music in stroke therapy. Melissa clearly loves her job and shares delightful stories of how her work has improved the lives of those elders to whom she gives care. Our previous interview focused on how music therapy supports the family caregiver. Both interviews are upbeat and insightful.

Whether you engage a music therapist, use songs to connect with your loved one, or like me, think in songs, let music support your on your caregiving journey.

Reconnecting with Mom and Dad

How do you reconnect with Mom and Dad? Even if one of them has a disease that causes dementia? It is often a challenge, especially when we’re trying to do something “special.” Family issues get in the way and we get frustrated. Your parents may not move as quickly as you do and you get irritated. When they don’t hear you (and you don’t understand them), tensions rise.

But I’m talking about reconnecting with them and not doing anything special. I recently interviewed Dr. Victoria Sweet, author of God’s Hotel. Dr. Sweet worked for over 20 years at San Francisco’s old Laguna Honda Hospital, a giant chronic care facility for the city’s destitute and ill. At one point in the interview, she said, “There’s nothing like presence and giving someone space.” Another reminder of the importance of being with someone vs. doing for someone. Dr. Sweet used to sit on the bedsides of her patients and listen. Or at times, just sit. It is that simple. But you must let go of the to-do list or the notion of doing something special.

Showing up is half the battle, but when you do, allowing someone space to express themselves—to cry or to laugh—is priceless.

Of course there are other ways to actively reconnect with your parents (and that is exactly what I talk about in The Unexpected Caregiver). Bring in a picture, a children’s story, a memento, and hook into your parent’s memories: “Tell me about this handkerchief, Mom” or “What is special about this book, Dad?”  Be gentle if there is memory loss. Reconnecting is not about the correct answer, but is more about sharing stories.

And don’t forget to hook into your parents by just sitting beside them, connecting through silence. Silence is, after all, golden.

Family Holiday Support (video)

I have put together a playlist of several short videos that focus on taking care of yourself during the holidays. I welcome your feedback on the videos and on your own holiday family issues as you cope with caregiving.

Don’t Take Anything Personally

“Nothing others do is because of you,” says Don Miguel Ruiz in his book, The Four Agreements.

So when your mom says that she’s lonely because you don’t visit more often or your dad complains about living in assisted living because you couldn’t make room for him in your home, don’t take it personally. Easier said than done. Read more »

Monitoring with Help

Aging in place is something many of us want for our parents and ourselves. We want to stay in own homes – wherever those homes may be. Monitor systems, emergency buttons and sensors can be part of making this a viable option. But are we as adult children or family caregivers ready to act on the information that we get from the various technologies?

Kari Berit and Bryan Fuhr in the Radio Studio

Kari Berit and Bryan Fuhr of Healthsense

I don’t know about you, but my father still gets slightly squeamish when he hears the word, “monitoring.” And yet according to my last radio show guest, Bryan Fuhr of Healthsense (www.healthsense.org), the majority of older adults he runs into welcome technology that will allow them to stay put. Read more »

Going over the Edge of Your Boundaries

This is what I will do and this is what I will not do. Seems simple enough. But when caring for a family member with whom you’ve shared a complicated relationship, staying within your boundaries is challenging.

I suffer from wanting to “make everything better,” and that’s when I tend to creep over the edge of my boundaries. It’s hard to see a loved one struggle, but if you don’t stay within your limits, you’ll soon be swallowed up by your caregiving role. Read more »

Your Story is Important

Every fall and spring I head to Concordia Language Villages, where I am in charge of a Norwegian Language and Culture Adult Week. And every year I hear stories from participants on their caregiving journeys. Because I have many repeat participants, I have been honored to walk alongside them for just a part of their caregiving journey. Here are snippets from my conversations (with small details changed to protect privacy):

  • Dad now lives alone and has begun to have wine with dinner. He may be drinking too much and I’m worried. What happens if he falls? And he wears a button around his neck, but he doesn’t remember to push it for help.
  • Mom has had another small stroke. She is now incontinent. She is becoming higher care. I’m tired.
  • Our friend no longer enjoys going out to coffee with his friends. He can hardly talk and is very unsteady on his feet. He mostly sits at home.

Our caregiving stories are important to share; others learn from them. I interviewed KYMN’s Tim Freeland, as Tim is on his grandmother’s caregiving team. Tim’s family is cutting nursing expenses and increasing contact in creative ways. Take a listen, then share your story.

There is No “Right” Way of Being a Caregiver

Kari Berit looking sympatheticWe are our own worst critics. The niggling voices in our heads suggesting we haven’t done enough or accomplished tasks correctly are simply…pests. Tell them to go away. (Which is easier said than done.)

Caregiving provides us ample fodder to be extraordinarily hard on ourselves. It’s a tough job. The job is about giving, but not to the point of emptying your own bucket of resources. As caregivers, we must also take care of ourselves. (Again, easier said than done.) But when we neglect self-care, we become overly critical of the care we give to others and that’s when we judge.

Just for a week, try putting yourself on the gentle cycle. There is not one right way of being a caregiver. Be yourself and be smart. Contact me if you need support.

Can a Case Manager Help?

Whether or not you need a case manager to help you sort out Mom or Dad’s hospital stays depends on how many things you want to guess at, versus getting informed guidance.

Pam Miles, Clinical Director at St. Luke’s Hospital in Allentown, PA, was my guest on The Unexpected Caregiver last week. Ms. Miles presented a clear-cut and helpful introduction to the role of case managers. Their professional organization is American Case Management Association (http://www.acmaweb.org), and they provide a rich definition of their role: Read more »

Star Tribune article features Kari Berit – Learning how to care as parents age

Learning how to care as parents age

Caring for aging parents often means establishing a new relationship, one adult to another.
By KIM ODE, Star Tribune

Logically, it’s not as if baby boomers couldn’t have seen this coming. Except that they’re — heh — baby boomers, and the conventional wisdom is that caring for aging parents requires them to 1) admit their mortality, and 2) come to grips with the fact that they can’t talk to their parents without someone ending up shouting. Read more »