Tag Archives: The Unexpected Caregiver

I want to see my parents!

When you want to visit your parents, but they’re in Corona Virus lockdown…as are you.

You thought making the decision to move your parents into senior living was tough? Not being allowed to visit is ten times harder. Most senior living communities are locked down due to the Covid-19 pandemic. No visitors, which includes family members. The original reasons for having your mom or dad move into senior living haven’t changed, but since then, the world has changed. The idea of not being able to visit feels unfair, even mean-spirited, yet it is imperative during this pandemic.

Skyping with my dad

You have the same feeling as when you were little; you want your mom or dad to be with you in times of uncertainty. Of course you want to see them. I want to see my dad, too, but because of Covid-19 travel restrictions, I won’t be making my regular visits in the foreseeable future. This means I won’t be able to see or hug my dad, or resume our cribbage tournament. We have had to find new ways to “see” each other. Although he resisted Skype at first, we are now enjoying our electronic visits. During one call, I was eating chocolate and my dad said, “I’d like a piece, too.” To which I answered, “Too bad; it’s all mine.” We laugh and talk seriously. We share programs we’re watching, books we’re reading, and walks we’ve taken. It’s not the same as in-person visits, but as my dad always says, “These are the cards we’re dealt.”

We’re all navigating very uncomfortable times, and to top it off, the care of your loved ones is in the hands of the senior living care team, people who may still feel a bit like strangers. How can they love your parents the way you do? They’ve only known your parents for a couple years, while you’ve known your parents for a lifetime.

I’ve worked as a manager in all levels of senior housing and I know that the professionals who look after your parents grow to love their residents—your parents—unconditionally. They become a second family. The news often reports on the negative aspects of senior housing, and there are issues, I understand that. What is not reported are the mundane, day-to-day interactions that staff members have with your loved ones. The countless smiles they exchange, the warm greetings heard in passing, and the endless patience in listening to familiar stories shared, perhaps many times. The list goes on and on.

Senior living is not perfect. Home care is not perfect. And certainly, you taking your parents into your home at this point would not be perfect, either. It’s too easy to question everything during a crisis, even decisions that were soundly made.

When we come out on the other side of this pandemic, we probably won’t be returning to normal. As with any change, we will create a new normal. Connecting with my dad electronically will be part of that. I see senior care communities also using technology, or doing something as simple as setting a chair by a window, so that family members can visit with only glass between them.

For someone with dementia, this type of virtual visit can be complicated or confusing. Before the crisis hit, I helped move a man into dementia care. His loving wife had reached the end of her ability to provide care, and even though she knew this was the best decision, it was still extremely hard.

Now she can’t physically visit him. Both she and the community where he lives are in Covid-19 quarantine. One of the creative ways she has been communicating with her husband of 60-plus years is sending large-font emails, complete with pictures, to the activity director. The staff then prints off the emails and after reading them aloud to him, leaves them by the bedside. This allows her husband to “hear” her words as many times as he chooses. Because of his dementia, he may not always understand his wife’s words, or why she isn’t physically there, but I trust something reaches him. Hearing her familiar words will touch an emotional cord even if he’s unable to acknowledge their effect, out loud.

We don’t know whether or not people with dementia understand lockdown due to Corona virus. It’s not a very digestible concept for many of us either. There is no need to “make them” understand or explain why you can’t visit. What is important in these trying times is to trust that the team of people who we consider essential, is caring for your parents. They are taking necessary precautions to keep your loved ones safe and disease free. And most importantly, many of them love your parents. It’s not the same love that you have for your parents, but it is a kind and patient devotion.

We will get through this, even if the “new normal” hasn’t yet been determined. In the meantime, it’s important to remember that something as insignificant as a phone call to your loved one can make a world of difference for both of you.

Surrendering to the Magic of life

My daughter just suggested we start a petition to “remove February and even the first and last weeks of March.” I imagine living in one of the sunnier regions of the world would make life easier during the winter months, but still, February and March seem interminable. The festivities of the holidays are long behind us, spring seems like it will never appear, and frankly, life feels sluggish. Winter seems endless. In a nutshell, this is how long-term caregiving can feel, like you’re stuck in a ‘never-ending February.’

Instead of fighting the February blues, I have been inviting surrender into my life. I returned to one of my favorite poems to remind me once again of how to “be helpless, dumbfounded, unable to say yes or no.” The poet Rumi talks of allowing “a stretcher of grace” to scoop us up, trusting that when we surrender, “miraculous beings come running to help.” I think a little magic is just the ticket, especially in the ‘February times’ of our lives.

Zero Circle

Be helpless, dumbfounded,
Unable to say yes or no.
Then a stretcher will come from grace to gather us up.

We are too dull-eyed to see that beauty.
If we say we can, we’re lying.
If we say No, we don’t see it,
That No will behead us
And shut tight our window onto spirit.

So let us rather not be sure of anything,
Beside ourselves, and only that, so
Miraculous beings come running to help.
Crazed, lying in a zero circle, mute,
We shall be saying finally,
With tremendous eloquence, Lead us.
When we have totally surrendered to that beauty,
We shall be a mighty kindness.

Rumi, 13th-century Persian poet, jurist, theologian, and Sufi mystic.

The boiling frog and the caregiver

I think most of us have heard about the fable of the boiling frog: If you drop a live frog into boiling water it will jump out. But placing a frog into tepid water and slowly increasing the water temperature, and the frog perceives no danger and is slowly cooked to death.

This is often a fitting metaphor of what happens as we start down the caregiving path. We can’t imagine putting an adult diaper on our husband, but incontinence creeps up and soon we find ourselves searching YouTube videos on how to change adult depends. Incrementally, the barriers are being broken down, and what we once said, “I draw the line at,” we find ourselves doing. We never dream we’d be cutting up our loved one’s food, let alone feeding them.

The truth is, much like the frog in the fable, these changes don’t all-of-a-sudden happen. Over time, we adapt to many changes and we enter into a series of “new normals.” What once was unthinkable has now become “just how it is.”

At the same time we are adjusting to the new normal, our stress levels slowly increase. We may be eating more often and less healthy food, exercising less in favor of another hour of sitting in front of the tube. We stop dining out because it’s embarrassing or just too difficult. We don’t invite friends to visit and we stop reaching out. Isolation creeps in and we just can’t put a finger on why we’re feeling gloomy.

I wish I had a magic pill I could give to the thousands of family caregivers who are beating themselves up because they feel they need to handle all the care on their own. This pill would do two things: First, it would engage the left-side or logical side of your brain, sending you the clear message that you are doing everything you can, to the best of your abilities. The second thing this pill would do is ignite your inner self-worth and trigger the message that self-care is vitally important. How can you be prepared for the emotional toll and strain of witnessing your loved one fade?

Unfortunately, I can’t offer a magic pill, only my encouragement to be both gentle with yourself and to ask for help. You are The Unexpected Caregiver. Learn all that you can, lean on others, and understand that small changes will creep up on you. Be prepared to have someone close to you point out that the time has come for you to seek professional help. Don’t be the frog who unknowingly drowns because it got used to the heat.

Article first appeared in “Southern Minn Girlfriends”

The Exhaustion of Fear-based living

Probably the hardest part of my days as a young girl was coming home from school. I didn’t know whether or not my mom would be awake with a drink in hand, or in her room. When she was in her room, the tell-tale sign that she was probably passed out was the empty insulated glass in the living room that smelled of pine trees.

Not knowing what I’d find kept me in a heightened state of fear. I ran scenarios of what I would do depending on who I found–awake mom or passed-out mom. I dreaded coming home, so instead, I kept ridiculously busy with extra curricular school activities. But that, too, was exhausting.

When I’m exhausted my emotional brain gets triggered. I receive panic messages: “You’re not safe! No one likes you! You can’t fix this or anything!” It’s very difficult to accomplish anything logical when the animal brain kicks into high gear. I don’t find myself wanting to run, so much as wanting to crawl into bed and “sleep it off,” hoping all the discomfort simply goes away.

I’ve grown to understand all those deep-seated emotions can easily be triggered by lack of sleep, an overload of external stresses, or a casual comment that hits me the wrong way. I’m also learning that when I’m triggered, I need to stop, acknowledge the feelings, understand where they come from, and take a deep breath. Sometimes I need to dance or go outside and work. Sometimes I need to cry and call a friend for support.

Caregivers can often get triggered, especially when they’re already beating themselves up for not doing enough or being enough for either the person they’re caring for or their families. You’re already tired and stressed because of the job of giving care. It’s as if your animal brain is just waiting to pounce on any trigger and throw you into panic mode.

Understand that fear is exhausting, that you’re already in a tender place. Write a note to yourself that says, “This is my animal brain on high alert. It’s not reality.” And then reach out to your trusted friend for extra support.

I get it; When caregiving is unpredictable, it’s extra challenging to respond in a calm manner, especially if you hold deep-seated past fears. Now is the time to change your old, outdated messages. Let go of the irrational fear messages and replace them with a new mantra, such as “All is well.” That message will seem fake and uncomfortable at first, but will serve you better in the long run. It’s also much less exhausting than living in fear.

College and Caregiving: when do they come together?

Five college students filled my kitchen with laughter and conversation over a leisurely summer breakfast. Only one of them was non-American, the other four were studying at the same college in Minnesota. I asked each of them what they would do if one, or both, of their parents needed care. The non-American, a lovely Russian woman who happens to also be an only child, said she would absolutely live with and care for her parents; “That’s how it’s done and I’m very close to them.” The other four were less certain: Would they have their parents move in with them, or find some type of senior housing? “We haven’t thought of this.” Why would they? They’re 20-something and their parents are “still young.”

I’ve been presenting on the topic of family caregiving and aging for nearly 30 years and still, family caregivers wonder why “no one” is talking about it. The press reports on the critical need to prepare more people to be caregivers, but the subject of providing care to an elderly loved one remains a subject swept under the carpet, or generally ignored.

Growing older is not a sexy subject and hence, doesn’t get the press it needs. Yet aging happens to all of us. If you don’t like it and try to avoid everything about it, how will you give care to an older parent? You have to love your own aging self in order to be loving towards an older adult. It’s way past time to think about caregiving and aging. Maybe we need to introduce aging and family caregiving into our public school system. Without some major change, I fear the impending silver tsunami will drown us all.

Spilled milk is just that

November is designated as National Caregiver month. I’m pretty sure caregivers feel like they need more than one month of recognition for the variety of jobs they take on day in and day out. I’ve spent my fall immersed in two different caregiver situations, both where husbands are caring for their wives. The three stories below are meant to help you remember that letting go is always important when giving care, and especially during the holiday season.

Situation One: A gallon of milk

My friend with Parkinson’s disease is too weak to lift and poor from a gallon jug of milk. Seems like a relatively simple solution: buy a smaller size container. But it’s not that easy. Sure there are numerous ways to solve this, but what one needs to take into account is the relationship of the couple. For many of you, we’re talking about your parents. They’ve lived together and operated as a unit for how-ever-many years. Their long-standing habit of buying milk in a gallon size container is too difficult to break. You may suggest a whole slew of alternatives on one visit, and then return for a second visit only to find the gallon-size container of milk. So the milk gets spilled all over the counter; it’s only milk. Don’t exhaust yourself trying to convince your dad that it makes more sense to buy in smaller containers. Heck, it may even be your mother who is making the buying decision and your dad simply wants to allow her that choice. Let it go.

Situation Two: Two right feet

Your mom comes out of her room and is shuffling a bit. You notice her shoes and see that she’s wearing two shoes that look similar, but are actually two different shoes. And she’s wearing the right shoe on her left foot. This is not a big deal in and of itself, but you may feel embarrassed for her. You’re going out and this once well-dressed woman is wearing one flat shoe and one with a heel. Your dad doesn’t notice the difference. But this one isn’t just about vanity; there is a safety issue to address. If one shoe has a heel and the other is a rubber soul, she could risk a fall. Can you get rid of one of the pairs of shoes? Can you talk with your dad and suggest he help her pick out a matching pair? Seems like reasonable requests. Have the conversation, but when Mom comes out with two mis-matched shoes the next day, let it go.

Scenario Three: Dementia and decision making

“It’s up to her,” said my friend. He was referring to whether or not his wife should have a three-step eye surgery that would return her eyesight to one eye. My friend is mixing up the details of the eye surgery with her diagnosis of Alzheimer’s disease (AD), saying, “There’s no cure, you know.” She’s right, but we’re not talking about AD, we’re talking about an eye procedure that would enable her to read again. You can try to talk with your mother, and maybe in the past it would’ve been a beneficial conversation. No longer. When a brain disease, such as Alzheimer’s, clouds her thinking there is no rationalizing. What makes this situation even more difficult is your dad. He is clinging to the past: Mom has always made her own decisions. Except now she can’t. She is unable. Her brain is not working in a way that allows her to digest facts and make rational decisions.

At some point, you have to let go of convincing either of your parents to change. Not easy, but necessary for your health. Find a trusted friend or a caregiver support group and vent, rant, scream, and cry. Let it out and then let it go.

Make a list and hand it out!

Recently I made up a Caregiver To-Do list and to my surprise, audiences ate it up. It’s a simple notepad where you get to write down what you need help with. And then give it away when people ask, “What can I do for you?”

Let me know if you think this would more easily allow you ask for help.

Or tell me where you struggle in asking for help. People want to lend a hand, they just need to know what you need.

 

 

How to turn around a bad day

You know those days: You get in your car and hear a new noise (after just paying a hefty repair bill); you drive past your chiropractor’s new place five times before calling to have them describe their location; the pharmacy can’t find your new prescription, and your favorite coffee shop is closed due to illness.

These are what some people label “First World Problems”—They’re pesky, irritating, but not life threatening. They are just the type of issues that can take up precious space in one’s brain, derailing an otherwise sweet day.

Caregivers have to not only juggle their own “bad days,” but many have to learn how to recognize when their loved one is having tough time. This is not easy from a practical standpoint, let alone an emotional one. We see someone suffering and we want to “fix” their issue.

My grandpa Floyd hated to see us cry. He would swoop us up, make funny faces, wipe our tears and say, “It’s all right. No need to cry.” But sometimes a person just needs to cry, and this includes someone with Alzheimer’s or Parkinson’s disease, or someone in pain.

I wrote in The Unexpected Caregiver, “Through music, we can acknowledge that it’s okay for them [the person to whom we’re giving care] to feel sad, recognize why they’re feeling sad and then help them move through the sadness.”

Give it a try: if you are having a tough day, put on a sad song to match your mood, and then with each new song, pick up the tempo. Music can be your ticket to turning around a bad day for you or your loved one.

Big Adventures and Unexpected Challenges

My mother was fixated on the idea of all her children being as Norwegian as possible. She claimed she was 100% Norwegian. She repeatedly told her kids that even though they had some Czech and Swedish from Dad, it was the Norwegian part that counted

She was not always an easy woman to be with, but I realized early on that the way to my mother’s good side was to fall in love with all things Norwegian. I went to St. Olaf College and by the end of my junior year, I was off to study in Norway. From then on, Norwegian was an integral part of my life—
from teaching the language to leading tours to the country. And now I live in Norway. Mom’s got to be dancing in heaven!

After 30 years, I reconnected with my college sweetheart. It didn’t take us long to figure out that we wanted to be together. Trouble was, I had a busy and active life in the States and he lived in Norway. He was a well-established American expat with two grown daughters. He enjoyed his career and wasn’t looking to start anew in the States. For me to take the leap and move to Norway seemed a cinch, a no brainer.

It was also a bit unbalancing. Even though my work has always been mobile, I still have a support system in Minnesota. Skype, email and other social media make it easier to live abroad, but there’s no substitute for hanging out in a kitchen and chatting about this and that with one’s friends.

I needed to find Support (the first letter in my SANE Method™) so I hopped on a bus and joined a  local dance class. I started opening up to Norwegian friends and made time to develop new expat friends. I sought out support. It’s the first step I take whenever I’m embarking on something new or difficult. I can’t do life alone. Even when, by all outward appearances, everything looks divine, I need support.

I chose this big adventure, and I know some of you make a choice to have your mom or dad come live with you so you can be their caregivers. We make choices for all the right reasons, but we also have to give ourselves a break and reach out when we need help. It’s the only way we can tackle big adventures, live and thrive through the unexpected challenges of our lives.

This blog first appeared as an article in my regular column in Southern Minnesota Girlfriends magazine, Spring 2018.

Here’s how I took a moment for myself today

I needed something different this morning. The pressure of the mushrooming to-do list almost stopped me, but instead, I played a game with myself. I picked up Roger Housden’s “Ten Poems to Change Your Life” and randomly opened to “Ode to my Socks” by Pablo Neruda, translation by Stephen Mitchell (pdf link below). I’m familiar with this one, but as with most poetry, something new awakened in me this morning.

Pablo Neruda has the capacity to celebrate the things right in front of us. I have had an affinity with this poem in the past because my feet are covered in papery-thin skin. I have my dad’s feet; we’re identical feet twins. Socks are important to me and I wear good socks—especially hiking or working in the woods.

But that’s not what this poem is about. Neruda reminded me to slow down and take a moment. Breathe in what is around me and celebrate it. Stop for one moment, shut off my critical mind-chatter telling me to “get going,” and appreciate the everyday, normal things. Like socks.

So I sat on the porch, closed my eyes and listened—a variety of bird voices, an airplane far above, the buzz of a bee circling me, cow bells in the distance, the rustle of the birch leaves—just for a moment.

I thought of my S.A.N.E. Method™  for caregivers, “This is Appreciation—to take time for oneself, even if just a moment.” (And believe me, I fought a little with myself over taking this time. We have a list, after all! It needs to be accomplished!) But the gift I received from this moment was just like an inexpensive trip to the spa. I feel more settled, grateful and have a renewed sense of energy.

Today I took a moment for Appreciation; this is what I want family caregivers to do. Find some small amount of time and instead of falling into the habit of another glass of wine (if that’s your thing) or one more episode of your favorite sitcom (believe me, I enjoy getting lost in the familiar characters, too), do something that shakes you up, something you don’t normally do. Or something that you simply want to try. What you gain from your moment will be different from what I found, but I trust you will receive a bit of mind rest. And that could make all the difference in your day.

Ode to My Socks

It’s never too early, but it can suddenly become too late

After a trip to Minnesota to see family and friends in need of care, I am reminded of the importance of telling others what you want. It’s hard to imagine NOT being able to speak for oneself, but I’ve witnessed a sister and a friend struggle to do just that.

This blog, albeit a bit longer than normal, appeared as an article in Girlfriend’s Magazine earlier this year. Read, enjoy, and then put your wishes to paper:

I had an exchange student from Norway in 2010-11. Henrik and I hit it off immediately. When he asked why I had chosen to have an exchange student, I jokingly replied, “I’m grooming you to take care of me if that day comes.”

Of course I was kidding with Henrik, but sharing my wishes has never been a joke. My Health Care Directive provides a good, basic overview, but like an excellent meal, I want my care team to pay special attention to ingredients that are unique to my tastes. If you find it challenging to write down your potential needs, may I recommend writing a letter? I think of letter writing as creating a recipe book for my care. The following is just one example of what such a letter can contain.

Dear Henrik,

You asked that I let you know how to take care of your “host mamma,” because, after all, you will be one of my caregivers. (You do remember that we made a pinky-swear about this, right?) Ideally I will hold on to my faculties and you won’t need any of the information contained in these letters. But if the day comes when I need you to care for me, these letters will provide insight. (Of course I expect you to train the others on my care team.)

We had tons of fun when you lived with me. We sailed into the wee hours and slept until 10 on Saturdays. You know I love active, full days, but I’ve also grown to cherish my quieter days. Some days will even be sad. Let me have those times, mixed with spells of uproarious laughter and spontaneous kitchen dancing. I like to process my feeling and alone time is important. However, if I’m alone for more than three days, it’s time to get me out (or bring people in).

I may complain when you tell me you’re taking me out, but please persist. If I remain disconnected from others for too long, my depression can easily pull me into a very dark place. Take me to a coffee shop. We can talk, read, or simply people watch. Take me to a bookstore, even if you don’t think I can read. Let me wonder and sit amongst the books. Take me to a movie or on a drive with a stop for ice cream and people watching.

If you invite friends for dinner, don’t get so caught up in the conversation and forget about me. I could easily get lost in the rapid-fire conversations if I have dementia. Include me by simply putting your arm around me. Nod and say, “Isn’t that right, Kari.” It will be your job to help me feel connected, even if I’m not contributing. Don’t worry if I can no longer form sentences. If I’m smiling, then I’m enjoying myself.

This letter writing is a two-way street, Henrik. If you have specific questions or wonder about a specific ingredient in my overall care, please ask. And remember, you’re not to do this all by yourself. You must also take care of you.

Love you!

Your host mamma

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.

Lost in a crowd of familiar faces

My dear friend Sylvia, who suffered from Alzheimer’s disease, was very agitated when I visited her at the nursing home. She was sitting in her wheelchair, banging it against the nurse’s medication cart. As I approached her I heard the nurse address her like this, “Sylvia you’re missing a shoe.” That meant nothing to Sylvia.

Later on, my dad tried to tell my friend, “This is where you can set your water glass.” Sylvia looked blankly at him and held on to her glass.

loneliness in a crowd copyEven though my dad felt that he was clear in his explanation, at a certain stage of Alzheimer’s disease sufferers can no longer follow simple instructions. We also can’t expect them to take part in or to understand our conversations, especially in large groups.

Part of what I do through my speaking engagements is help people understand what it’s like to be with familiar faces, but still feel totally lost in everyday conversation.

The closest I have been to understanding how Alzheimer’s disease can impede communication was when I was on a semester abroad in Norway. I remember one such time where I was the one completely adrift in a crowd.

A friend invited me to a party where I met a number of his friends. My Norwegian language skills were good, but nowhere near good enough to keep up with the rapid-fire conversations that were happening all around me. I felt lost, confused and totally exhausted by the end of the evening.

To top it off, I took the wrong bus to get back to where I was staying. When I finally arrived at my apartment, I was in tears. My roommate greeted me with, “We’re only going to speak English and tomorrow I’m taking you to the American Lutheran Church.” That’s how she helped me regain my footing and feel connected again.

I offer three ways to help you stay connected with a loved one who has Alzheimer’s disease and struggles to communicate:

  • Connect with your eyes—stand or sit at the same level with your loved one and look them in the eyes. Look at them when you’re talking to others, even if they aren’t able to contribute. Let them know that you see them and that they are included.
  • Slow WAY down—speak clearly and in short phrases. Allow pauses in your sentences and space for them to respond. Their response may come out in “word salad,” but nod and acknowledge them; don’t correct them. If they have lost most of their ability to speak, refrain from asking them questions that require complex responses.
  • Use touch—if they can’t form sentences, include them in the conversation by holding their hand or sitting close to them.

If you’re able to shift how you interact with a loved one suffering with Alzheimer’s disease, you also take care of yourself. You stay SANE* in a challenging caregiving world.

*Supported, Appreciated, Not Guilty and Energized, explained in my new edition of The Unexpected Caregiver

A Valentine’s Day Reminder for all ages

I will never forget where I was and how I felt when my dad informed me that he had asked a woman out on a date. A date? My dad…but wait, he’s married to my mom. My mom had died in January of 2002 and it was the fall of 2003 when we were having this conversation. I knew it wasn’t too soon, but none-the-less it felt, well, weird. My dad was informing me that he had asked a woman out because we lived in a small town and he was sure I’d hear about it from one of the many local town criers if he didn’t tell me himself.

He also wanted me to meet her, which I did. Is this what it feels like when ones parents meet their child’s first date? I wasn’t sure what my role was, so I asked my dad just what he wanted from me. My approval? My advice? Then, after I breathed in and out several times, I realized that my dad simply wanted me to share this part of his life with him. Nothing more was required of me.

snow heart in mittensForget attaching the adjectives “cute and little” in front of “older couple.” The Silent Generation (those born between 1928 and 1945) is redefining intimate relationships. My dad’s generation is formally known as the people who “had to get married in order to have sex.” They are now forming new relationships, ranging from walking down the traditional marriage path to living in separate houses in different states. It doesn’t matter if they share a bed or not. What matters most is intimacy—closeness, companionship and love. Valentine’s Day serves as reminder that we all—no matter our age—need relationships that sustain us. Happy Heart Day all!

Four tips to laughing with your folks

I love being with my dad when he watches any of Peter Sellers’ Pink Panther movies. He literally cries uncontrollably and I end up cracking up just watching him. Laughter often comes spontaneously, but there are some days when I have to purposefully seek out fun. Busy caregivers can easily get buried in all the tasks of giving care. “I don’t have time to goof off,” I had one family caregiver tell me. I hear you and I understand that there are many moments in life that feel nearly joyless.

So how do we bring back the fun? How do you play, goof off, act silly during a day? I am fortunate that the man I married is never without a joke—however screwy. And even though most of his puns and word plays are “groaners,” I laugh (as do his daughters; one Mallory and Johnof them seen in the picture,  being silly with dad). It’s good for our emotional health to laugh and it certainly lifts our moods, but that’s not the only benefit.

If we constantly work, work, work, without relief, then our brains — and our bodies — begin failing us. Want an upside? Playing actually helps us get things done. Think about times you’ve struggled to complete a task, becoming more and more frustrated with yourself. Then someone does something funny, you laugh — and suddenly the task is not so difficult. When we shift our thoughts and do something out of the ordinary, our brains are refreshed and begin humming along again. Our bodies benefit, too. It’s been said that when we laugh, we release endorphins — the brain’s feel-good chemicals. Some researchers also contend that as well as lowering blood pressure, laughter increases oxygen in the blood, which encourages healing. Whether or not that’s true, I’ve found that a good laugh is worth its weight in gold.

When it comes to spending time with your parents (something your parents crave and you may dread), nothing says you can’t spend your time together playing. If you’re constantly checking your phone when you’re with your parents, or fidgeting trying to find something else to chatter about while wondering how soon you can beat a hasty retreat, odds are you really need to play.

Try these four tips:

  1. Watch a funny movie together (Dirty, Rotten Scoundrels is one of my favorites)
  2. Put on music from their era and dance (Nothing beats 50s dance music with my dad!)
  3. Reading aloud from a favorite joke book (I’m a sucker for Garrison Keillor’s Pretty Good Joke Book)
  4. Retell funny family stories (Like the time my then little brother Dave had to “relieve himself” on a car trip. Dad pulled the car off the highway, only to have Dave face the car, spraying the front fenders, causing my dad drive in reverse down the highway shoulder!)

Caregiving means taking care of some tough issues. Don’t let it consume you. Give yourself permission to laugh and include some fun time! You can find many more tips in my updated edition of The Unexpected Caregiver. And please, share your tips with me.

How long should I grieve?

OLYMPUS DIGITAL CAMERAI remember crying at the oddest times after my mom died. I burst into tears while sitting on the toilet once and another time when presenting in front of a group. Tears come and it’s okay.

Grief is a reaction to loss and is ongoing in many caregiving situations. The person may be alive, but we’re watching pieces of them disappear. Caregivers suffer from a double grief: grieving the end of a loved one’s life, but also grieving the small, constant changes that continually take away and diminish the person we once knew. There’s also another grief: the loss of our life as we once knew it and as we had planned it to be (we don’t have more than one life).

Generally, we don’t “get over” grief. There is no set time frame for grieving, but we do want to move through it rather than get stuck in it. For some, grieving has been such a constant companion during caregiving, that once our loved one dies, it is more of a relief than a continuation of sadness. There is no judgment about grief, but please recognize that this period of time — however long or short — is part of the process. Allow yourself time. Feel what you feel, share with others and seek support. Then give yourself permission to move beyond grief. The goal isn’t to forget. The goal is to survive the time of grief, find a way to hold onto the memories and cherish what you had.

Taken from the New & Expanded Edition of The Unexpected Caregiver®: How to keep Mom & Dad active, safe, independent and yourself S.A.N.E.

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.

If You could stop the world, would you?

In the 1960s musical, “Stop the World—I Want to Get Off,” the lead character, Littlechap, breaks the fourth wall and addresses the audience whenever he wants a do-over. How many times would you say, “Stop the world”?

stoptheworld1I acted in this play while at St. Olaf College and often recall the poignancy of that phrase: “Stop the World.” Maybe if we were not racing around, we wouldn’t need do-overs. Maybe if we measured twice, we wouldn’t make so many mistakes cutting. I’m guilty of this: The busier I am, the more successful I feel. But this is a ruse, plain and simple. I love how Brené Brown puts it: “What we know matters, but who we are matters more. Being, rather than knowing, requires showing up and letting ourselves be seen.”

Being rather than doing also requires presence. Especially during the holidays, it’s too easy to do, do, do—go, go, go. It’s much more challenging to sit quietly and not do. It’s nearly impossible to understand that one’s self worth has little to do with how busy one is.

Possibly the best gift you can give your loved ones (and yourself) this holiday season is to stop: turn off your cell phone, shut down your computer and just hang out with your loved ones. It won’t be easy to do at first. If you’re like me, sitting still is not my norm. But the times I’ve let silence be my friend have rarely failed me. Don’t get me wrong, I love the big dinners and festivities of the holidays, but sometimes, every once in a while, let yourself off the hook and focus on the being rather than the doing.

Are you a care TAKER or care GIVER?

It’s a simple difference really—do you build your self-esteem around caring for another person? Do you get a small “high” from caring for another person? This is care TAKING. You may be late to work, snap at your family, or complain that you’re the only one who cares. Care Taking is all about your ego and it’s not healthy.

Care GIVING is about compassion, being centered in love and gratitude. This doesn’t mean that you set aside your own needs, however. Give care while staying S.A.N.E.—Supported, Appreciated, Not guilty and Energized™. How do you support yourself? Do you appreciate what you do for someone else? Are you able to drop the guilt? And where do you go to refuel yourself when the duties of caregiving seem overwhelming?

I’m happy to announce that the new and revised edition of my book, The Unexpected Caregiver. I’ve added six new chapters to help you, the family caregiver, look after your own needs while giving care to a loved one. I’ve even added a chapter on the oftentimes tricky subject of your parents dating. You can order a copy for yourself, family and friends. I’m thrilled that I can offer this resource to you. Happy reading and please, be good to yourself.

This month is for you

November is the month that the U.S. officially recognizes family caregivers. Why is this important? Simple. Family caregiving is a job, a role you take on many times without any pre-planning. It’s not an easy journey and many times it requires you to turn your life upside down in order to meet the needs of your loved one. I think it’s valuable that there is month dedicated to YOU—the Family Caregiver.

I’d like to share parts from this year’s Presidential Proclamation:

“Our Nation was founded on the fundamental ideal that we all do better when we look out for one another, and every day, millions of Americans from every walk of life balance their own needs with those of their loved ones as caregivers.”

take-care-of-self-first-copyThe theme of this month is “Take Care to Give Care.” You can’t give when your tank is empty. Well, you can…but it will be harder on both you and your loved one. Spend just a moment to think about how you can refill your cup.

“This month, and every month, let us lift up all those who work to tirelessly advance the health and wellness of those they love. Let us encourage those who choose to be caregivers and look toward a future where our politics and our policies reflect the selflessness and open-hearted empathy they show their loved ones every day.”

“Choosing” to be a family caregiver rarely feels like a choice. I encourage you to turn that around: Make a conscious decision about who you will be as a family caregiver. Rather than feeling like you “have to,” and that you’re “the only one,” find ways to support yourself. You don’t have to do this job alone, but you do have to ask for help. It rarely comes unbidden.

This month or any other time, I’m here for you.

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.

No, You can’t do it by yourself: 5 Tips for Caregiver Support

 

My mom burst into tears in the middle of a restaurant dinner and instead of asking, “What’s wrong,” I was embarrassed. I thought, “Why can’t she pull herself together?” My mom had a disease called Huntington’s disease, which renders its victims incapable of acting what many call “normal.”

If you take care of someone with a disease that causes dementia, you are not living a “normal” life and caregiving is therefore doubly challenging. You may think, “He’s doing this just to drive me crazy,” when in reality the repetitive questions or unpredictable behavior are not malicious. You’ve known this person for years and now you are their caregiver—helping with daily tasks, while getting to know someone who is actually a very different new person.

Think of it this way: Do you ever get really frustrated at a vending machine when it won’t take your dollar bill? You straighten out the bill, insert it again, and it just keeps spitting it back, even though the bill looks fine? Your loved one may also look fine on the outside, but their brain is not working the way it used to. You need to find a new way of being with him or her, while you simultaneously figure out how to take care of yourself.

I know you want to scream. Some days you even yell at your loved one, but that only adds to your stress. This is why you must find support—a person or a group which allows you space to say all the things you simply can not say directly to your loved one. Being supported along your caregiving journey is the first step in being a S.A.N.E. caregiver—Supported, Appreciated, Not guilty and Energized. Start by finding support for yourself:

  1. Educate yourself about the disease so you know what to expect.
  2. Let off steam with a trusted friend.
  3. Set aside a half-hour a day to do something just for you.
  4. Join a support group (or start one).
  5. Find ways to laugh every day.

You know you would do anything to help out someone in your shoes. It’s time to take that same spirit of helpfulness and turn it inwards. Ask for help and let others support you.

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.

Expressing love for one’s father

My friend Evan’s tribute to his father resonated with how I feel about my dad. Evan tenderly illustrates the importance of recounting a parent’s influence and meaning in one’s life. I share this in hopes that it will inspire you to do the same, if not at least contemplate gifts and lessons you’ve received from your parents.

By Evan Brown

No recipe, but maybe an acknowledgement of the recipe of life.  Sometimes we face moments we know are coming, think we are preparing for and find ourselves so unprepared and wishing for more…more time, more conversations to say all the things we wanted to have the chance to say, more time to just be in the same room enjoying their company.

My father, Lee Brown, passed away, gently in the early morning.  He was 82 and had spent a long time with some serious lung issues.  I will really miss him, for all that he shepherded out of me. Read more »

Caregiver support online

CaregivingNOW_OnlineConvoBannerWebSmallThere is a forum where you can get support on your caregiving journey. And if you’re not a caregiver (yet), I’m sure you know someone who is. Sign up here and join the conversation: http://unitedfrontmn.org/caregivingnow/.

We tend to avoid having the conversations around giving care because we feel we ‘should’ be able to do this without assistance from others. Well, that’s just not the case. We all need help when caring for someone else, lest we lose ourselves in the process.

November has been deemed National Caregivers Month and I sincerely hope that this one month of highlighting the often-times tough journey of family caregivers expands the understanding of this role.

Join me today for a special 3-day conversation focused on helping you create more joyful holidays with clearer boundaries. As always, if you want one on one help, click here. And if you’re looking for an on-going support group, check this out.