Category Archives: The Unexpected Caregiver Radio Show

YOAD—Alzheimer’s isn’t just for the old anymore

While waiting for a flight, I scanned The Times of London. The sidebar on page 14 read: “Dementia kills man, 40.” I was immediately troubled by how we continue to report dementia as a disease. Dementia is a general term for decline in mental abilities. Dementia happens because there is a brain injury or illness. The person mentioned as “one of the youngest reported to die from dementia,” had damage in his frontal and/or temporal lobes of the brain. That damage had caused the dementia, named “Frontotemporal dementia.”

brain_witelsonMaybe it’s because I’m in the field of aging and family caregiving that I want us to have a better understanding of diseases that cause life-altering dementia. I wish that more people understood these diseases, especially as we’re seeing more cases in younger people.

Young Onset Alzheimer’s Disease (or YOAD) is often misdiagnosed as depression or simply “change of life” issues for women. I interviewed a man on my radio show who struggled for years to get an accurate diagnosis. He started noticing changes in his mental capacity at age 39 and his doctors came to the same conclusion: he suffered from stress.

I personally know people with YOAD and it is incredibly difficult to be in public with them. We simply aren’t trained in how to respond to older adults with Alzheimer’s disease and we’re even less prepared to handle awkward conversations with younger people who have YOAD. I remember being in a fabric store with a friend who has YOAD. Someone approached her and said, “I love your jacket; where did you get it?” That was too much information thrown at her far too quickly. She couldn’t answer. I put my arm around her and said, “I remember when you got this jacket, but I can’t remember where you got it.” (My friend shook her head in agreement.) I know it’s your favorite.” (And she again agreed with a smile.) The inquiring stranger accepted that answer.

When you suspect someone is struggling to communicate or if you know someone has YOAD, be extra kind, but don’t treat him or her like a child. If they can’t verbalize, help them out in the most supportive way you know how.

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.

Ew! Nanna and Pappa should not have sex

By Dak Gustal

Oh my! Did you know that sex is such a big deal?

I sure didn’t. I was surprised to find out that people think about and want to have sex even when they have wrinkles and gray hair.

Yeah, I took a look at this article about how people get fired when residents have sex in nursing homes, and also at this one about people that allow and expect it to happen. Read more »

Three Taboo Subjects to Raise with your Aging Parents

Finances, Mental Health and Sex: Three topics of conversation avoided in the calm times and poorly handled under crisis—especially when a conversation needs to take place between an aging parent and their adult child. Read more »

A new way to handle ‘badly behaved’ older adults

Tase them! This isn’t the first time a nursing home resident has been tased and it won’t be the last. It should cause alarm bells to be clanging in the hearts of everyone caring for an aging loved one. We aren’t given details in the report (I’m waiting for Paul Harvey to fill us in with “the rest of the story”), but it’s very disturbing to think that a professional caregiver felt it necessary to call in outside enforcement.

I’ve been in tough situations with residents. I recall Ann in a dementia care community I managed: she believed herself to be a nurse by day, thought she needed to free fellow residents by night. When our dementia care community’s water pipes sprung a leak and we needed to evacuate residents just after bedtime, Ann seized the opportunity. Read more »

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.

Time to Reboot

I’m worn out. I’ve had it. I don’t know where to turn.

I have heard these three statements in various forms quite a bit lately. With my private caregiver coaching clients, my friends, my family. I get it. Being tired after a good workout or a long day of work is one thing. Being worn down from day after day of not getting ahead, not accomplishing your to-do list (let alone your mother’s or husband’s), or feeling defeated from all you’re trying to be for everyone else…that is a whole other beast.

And the voices in your head! How do you turn them off? The non-stop judging of how little or well you’re doing, the old tapes that seem to be stuck on repeat…Those voices seem to have moved in permanently and do not listen to you screaming “Stop!”

Whether you’re a caregiver or not, my interview with Robin Collins on “The Unexpected Caregiver Radio Show” will provide you with down-to-earth, accessible advice for how to reboot your core thinking. Her wisdom resonates to the heart of your being. If you haven’t yet listened, I offer you this gift from Robin. And here’s how you can get in touch with her: lovetothe5thpower@gmail.com

Robin Collins offers that reboot we all need. And I am so grateful.

“I See Dead People”

It’s totally normal for someone who is dying to see “others” (many times relatives). They may even talk to them. You may think they’re going crazy, but it’s very common. Sometimes a dying person will say something such as, “Aunt Mildred was here and asked me to go with her….” These experiences happen, as Christine Cowgill told family caregivers on The Unexpected Caregiver Radio Show.

I realize that you may not want to discuss death, but when a loved one is dying, it can be the central theme of one’s days. Read more »

Thank You, My Not Always Perfect Mom

KG & DianneMy mom died January of 2002. Even though I was a choir director at the time and living in Denver, CO, I got the gut call to fly home for Christmas. I felt an intuition that I should sing The Birthday of a King for my mom, a song that, over the years, she had often requested and that last year I honored. We had tickets to return to Denver on December 26th, but learned—at the airport—our flight had been permanently cancelled. Eric flew out the next day, but I remained because Mom had just been admitted to the hospital and Dad wanted me to stay. I stayed that time and one other, when we received the doctor’s diagnosis of liver cancer. That third time I tried to return to Colorado, Mom died. Read more »

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.

It’s not you; it’s your hormones

Thank you Dr. Sara Gottfried for reminding us to stop blaming ourselves and take a look at our biology. If our hormones are out of balance, we’re struggling against our selves. I gained invaluable insights into hormones during my radio interview with Dr. Sara: Caregiving and Hormones.

As women and as caregivers, we tend to give and give and give. Dr. Sara sees thousands of women in her medical practice. The majority of her patients fall into the classic definition Read more »

Long Term Care…It’s Not Just about Your Parents

I don’t want to dwell on what I may need in the future for care, so I’ve taken steps to create a plan. My Health Care Directive is completed (although I know I can make changes to it as I feel necessary). I’m re-working my will and I’ve purchased long term care insurance. You may have been on this journey with your parents, but what about your plan? Read more »

Your Legacy May Live on in Cyber Space!

The PBS News Hour covered a story on our digital real estate. Do you know how many people die every day in the Facebook world? According to the News Hour story, three. That’s a lot of ghosts haunting the social media world of Facebook.

Planning for a death is not a popular event, but it is a rare and precious gift to your survivors. Read more »

We All Need Support On Our Caregiving Journey

I can’t take it any more!
I don’t know what I’m doing.
I feel like a failure!

Statements like these are what I routinely hear from family caregivers. We are not trained to do this job and yet we think we “should” be able to do it on our own. When we get frustrated and don’t know what to do, who do we turn to?

I’ve been developing the Unexpected Caregiver Support groups—so that family caregivers can meet once a week and understand that they’re not alone. In these peer-to-peer run groups, I have seen family caregivers let out huge sighs of relief and gratefulness, knowing that they share this journey with many others. That their feelings aren’t unusual or crazy. And in these groups they can speak their feelings and trust that what is said in the group, stays with the group. We have built little communities of trust.

When you’re giving care to a family member, it’s not uncommon for your past issues to resurface. All those unresolved issues of childhood come bubbling up to present day and you are stuck with an overload of emotions. What do you do with the feelings? Who will understand?

Caregiver support is crucial. You can receive one-on-one support from me or I can help you start a support group. Contact me. I’m here to help.

Who wants to talk about incontinence products and wipes?

Lynn Wilson (listen to our interview here) along with her husband Tom do! They own The CareGiver Partnership and answer phone calls every day from family caregivers who need incontinence and other care products.

I can’t imagine ever having to help my dad with incontinence or bathing issues. I’m sure many of you shudder just thinking about it. It’s not uncommon: your mom is in the hospital and at discharge time, you are told that she will need help with bathing and toileting. Read more »

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.

Why call yourself a caregiver?

November has been all about caregivers, but what, exactly, is a caregiver? Wilder Foundation has a beautiful campaign that addresses just this: What is a Caregiver.org helps put a definition around the term caregiver. While you may think you’re just a daughter bringing mom a few groceries or just a son mowing the lawn for your aunt, you’re a caregiver. Why identify with this term?  Read more »

Life is.

“I let everything be as it is.” My radio show guest, author Coy F. Cross II, shared this quote by Adyashanti today. It might be a good quote to hang onto as you start or continue your caregiving journey. As a family caregiver, you can’t fix things. You aren’t necessarily called to play that role. Most of the time, we’re just supposed to be present for our loved one needing care. And that isn’t always easy.

But it doesn’t have to be difficult either. It just, well, is. “Life is our classroom. If we live consciously, life will present us the lessons we need for growth and we will see them as such.” (The Dhance, by Cross).

I wonder, what lessons about being a family caregiver have come your way recently? I’d love to hear from you.

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 »

Expanding the Reach of The Unexpected Caregiver

The Unexpected Caregiver logoKari Berit Presents recently entered into a a strategic partnership with Neuger Communications Group, a Twin Cities-area communications firm. Our goal is to raise awareness and carriage of The Unexpected Caregiver radio show and to develop sponsorships to support the program.

The ultimate point, of course, is to get helpful information for caregivers and seniors out to a much wider audience, starting in Minnesota and adjacent states but with ambitious plans to extend this coverage across the country. Read more »

A Look at Health Care Costs

Kari Berit interviews Michele Kimbal of MN AARP

Kari Berit interviews Michele Kimball of AARP

My insurance agent contacted me: Rates are going up again on my personal health insurance. I either accept the higher rate or reapply.

I don’t understand all the changes that are on the horizon for health care, and that’s one reason I interviewed Michele Kimball of MN AARP on The Unexpected Caregiver radio show. Michele clearly describes just a few of the benefits to family caregivers and their loved ones. In this time of sound-bite media, this is a refreshing interview on the Affordable Care Act.

And speaking of health care prices, my favorite assisted living nurse was on my radio show last Thursday, talking about how the cost of care can change with varying service levels in assisted living. Nurse Tina provides such clear examples and sound advice. Watch for a compilation of my Nurse Tina shows coming soon.

My Sister Has Huntington’s Disease

Kari with her sister AnneMy 51-year-old sister has HD—Huntington’s disease. She was willing to be on The Unexpected Caregiver radio show, but was nervous—not about telling her story, but about having a microphone in front of her! Anne has a large personality, but doesn’t like being singled out.

HD is a degenerative brain disease. It is unkind and inherited. Our mother had it. She inherited it from her father. It does not skip generations and does not favor one sex over the other. Anne has four children. They are at risk for HD. If none of her kids have the defective gene, then the disease stops with that generation and is finished in that family. That is our prayer. Read more »

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 »