Category Archives: Caregiving Issues

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.

 

 

For the love of food

If we didn’t take seconds when my Grandma Jo offered, her classic response was, “Fine, I guess I won’t make this meal again.” She consistently told us we were too skinny. And at times, if we didn’t want to try something, she would shame us by saying, “Good, more for the rest of us.” The family all knew that food was love when it came to Grandma Jo.

It was almost the opposite with my other grandmother. Grandma Gladys didn’t like to eat. She had nearly rotten teeth! She liked saltines with butter, pie at the local post office cafeteria, and considered a glass of milk to be dinner. As a little girl, I preferred the ease of enjoying decadent butter (we used margarine growing up) on salty crackers to fighting for Grandma Jo’s love by overeating.

Meal times in senior housing are daily events. Sometimes the food is good, but most often, adult children hear regular complaints about institutional food—there’s too much, it’s over cooked, it’s underdone, it’s too fancy, etc. Years ago I asked a group of elder care specialists what they would want if they lived in senior housing. Good coffee was the answer; Starbucks on every floor! I see mealtimes in senior housing from both sides. As a manager, it’s challenging (and costly) to have both flexible eating times and a wide variety. Obviously it’s much easier to “feed the masses” in restricted time frames with a set menu.

For some, mealtimes are the only time they leave their room or apartment. It’s community time, time for sharing during a meal. Most people agree that it’s much more enjoyable to make food for two versus one. But what if you’re caring for someone who can’t express their food wishes? I often wonder about my friend with YOAD (Young Onset Alzheimer’s). One time when I was with him, I asked, “Do you want a Peanut butter and jelly sandwich,” and his eyes lit up and he shook his head and said, “yes,” while grinning.

If food is love, then while we care for someone, we need to remember their history of likes and dislikes. For some folks, Cheerios can be dinner, once in a while. Not every meal is a success. Sometimes I burn a meal and resort to a can of soup or a simple salad. That’s okay, too.

One of the hardest things to give up is food—both for your loved one and for you. In the last days of my mom’s life, she was not interested in food. My sister tried desperately to get her to eat, until the Hospice nurse said, “She really doesn’t need to eat….” There are times when not eating, but rather sitting with a loved one, is filling enough.

This piece originally appeared in Girlfriend’s Magazine earlier this summer.

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

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.

 

Beating depression by being both busy and engaged

When I have too much down time between projects, I can easily spend more time sleeping or surfing Netflix than is good for me. I get stuck. My depression blooms when I am not engaged in IMG_2826 - Version 2meaningful activities. I lean on my SANE Method*, knowing that the first word, Supported, is crucial to moving through a tough period. I have a circle of safe and positive friends on whom I can call.

I also understand the importance of being busy. I don’t usually subscribe to “busyness for busyness sake,” but at times there is value in simply getting out and doing something—anything. This won’t sustain me in the long run, but it works to move me through to meaningful activities.

Family caregivers can easily fall into variations of a similar trap: thinking that the appearance of their parents being busy trumps the actuality of being involved in an activity that’s engaging and meaningful to them, or thinking that — like some impromptu cruise directors on the Good Ship Getting Older — it’s somehow now up to the children to constantly be planning activities for mom and dad.

Don’t get me wrong. There’s plenty of value, mental and physical, in spending time with your parents to help them stay active and busy. But I believe it’s the “slow times” and the hours when your folks are on their own, pursuing their own interests in their own ways, that provide the greatest payoffs for their emotional and bodily health.

Just as is true with yourself, the goal is to help your parents get into things they will find enjoyable over the longer term — including activities they might do solo and under their own direction — because those are the ones they’ll do regularly and sustain by themselves.

If you notice your parents isolating themselves more and more, try opening a conversation about what brings meaning to their lives. And ask them how you can support them. Your support — whether is be simply listening to them or assisting them with ideas — can be one of the single most important things you do for your parents.

*Supported, Appreciated, Not guilty and Energized.

 

 

 

 

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.

Three Easy Exercise Tips for Busy Caregivers

Ever since I was on swim team in junior high, I’ve understood the value of exercise. (That doesn’t mean I’ve always done it… just, I’ve understood the value of it.)

Since I’m not always consistent, I get it that many family caregivers drop their exercise time in order to fit in another care task. How can you change that and put exercise at the top of your list?

I can be very hard on myself for not doing “enough,” but let’s turn that around! Whatever movement you can get into your day is good. Did you ever see the Blue-Cross, Blue-Shield commercial, “Do Dance” that introduced the “Do Groove Guy“? This commercial aired in 2004 in Minnesota to encourage people to get healthy by moving and doing or grooving. It’s a fantastic message: exercise can be as playful and individual as you make it.

Version 2These days I mix up my daily power walks and yoga with exercises I learned from a trainer I hired a few years back. I also dance–whenever and to a variety of music. The less time I spend worrying about when I will exercise and just move, the better. All that good oxygen that gets into your brain from movement will help you be move creative in your caregiving. Keep in mind these three tips:

  1. Take the stairs instead of the elevator
  2. Get outside. Fresh air and a brisk walk does wonders
  3. Arm circles—10 forwards and 10 backwards will get your blood flowing

If you can focus on sneaking more movement in during your day instead of pressuring yourself to get “enough” exercise, I know you will be a happier caregiver.

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.

No Guilt this Holiday season: Three ways to be kind to yourself

Having a guilt-free holiday season means being extra kind to yourself. Families can be even more demanding at this time of the year. I learned a hard lesson from visiting my sister. There were times when I only had an hour to stop off and see her, but I knew that she would not be happy with a “short” visit. I constantly felt guilty for not having more time and wound myself in knots trying to explain myself to her. She didn’t want excuses and the short visit usually ended in harsh words and bad feelings. And my guilt was not assuaged one bit.guilt-free

I am not in control of my sister’s response to my availability to visit. You are not in control over how your family reacts to your desires to spend the holidays alone or with other people. We only have control over how we respond to situations. Understanding this helps release guilt. Especially during the holidays, replace guilt with self kindness:

 

  1. Use a kindness mantra. This can be as simple as repeating the word ‘kindness’ in the morning or during a stressful commute. I often repeat my mantra word while walking. Instead of negative thoughts swimming around our heads, we need to create positive reminders that we are worthy of self care.
  2. Spread kindness. I find that when I do little, unexpected kind gestures for others, I feel loved. Just the other day I randomly offered to pay for a woman’s coffee. The look on her face was that of delightful surprise. She expressed her gratitude and I accepted it warmly.
  3. Maintain perspective with E+R=O — Events happen and how you Respond will determine the Outcome. Our egos think we have control over others’ feelings. We don’t. We can only be who we are, act with kindness, and let go of what other’s think. It’s much easier to do this when we remember how little control we have and that being kind towards others is a positive way of letting go of our pesky ego’s need for control.

OMG it’s the holidays—Five tips to stay S.A.N.E.

Shamed to eat seconds and thirds of the turkey dinner, loud conversations about uncomfortable topics, menfolk sleeping in the assorted Lazy Boy chairs while womenfolk did the dishes. That about sums up my childhood Thanksgiving tradition. We didn’t dare do anything different lest we offend someone. But times have changed.

Family caregivers tell me they feel stressed to keep up with intense holiday traditions “for Mom and Dad’s sake.” But if one of your parents has any dementia or physical limitations, putting on “the big family affair” no longer makes sense. All the hustle and bustle becomes overwhelming, especially for someone with dementia. Remember the acronym KISS—Keep it Simple Silly—and replace stress with letting go of what you think needs to happen.keep-calm-christmas-ball

Last Christmas our family scrapped the usual tradition of making all the food and ordered it from the local grocery store. We supplemented with some favorites, but overall we let go of the need to be in the kitchen all day. As you enter the holiday season, consider these ideas for creating more S.A.N.E.* holidays:

  • Have smaller gatherings—one of them with hot turkey and the other with cold turkey sandwiches while watching a movie
  • Book a table in your parent’s assisted living or commons room, order food and listen to Benny Goodman tunes
  • Schedule time outdoors and play in the snow or at the beach
  • Gather old photos and help your parents create books to give to younger family members, OR
  • Consider time as your gift: put away cell phones and electronic devices and be present with your loved ones

*S.A.N.E.—Supported, Appreciated, Not guilty, Energized™

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:

dscn8428

  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.

OMG I’m a Caregiver: Three Tips to Feel Appreciated

I never thought I’d be called at 2 a.m. to help my grandpa use the commode. Who wants to see their grandfather in such a vulnerable position? But I did it, and fortunately my grandfather was good at expressing his gratitude.

This isn’t the case with all caregiving. You didn’t ask for this new role and as one caregiver shared with me, “I do everything for my mom and my siblings can’t seem to find the time to help.” Wherever you are in your caregiving journey, old sibling rivalries often return, especially when taking care of Mom or Dad.

The second letter of my S.A.N.E. acronym, Appreciated, involves understanding that your family is not going to change now that care of a parent is needed. Be realistic and look at how your family functions (or doesn’t function). Don’t expect them to change their deeply conditioned behaviors; rather, manage your own expectations. Use these three tips to feel more appreciated:

  1. Let go of feeling you need to do it all. Allow others to help.
  2. Let go of the “shoulds.” Appreciate your own health and take time for you.
  3. Give up the idea of being thanked by others. Thank yourself.

 

 

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.

I See that you’re suffering; let me provide relief

“When all is said and done, killing my mother came easily. Dementia, as it descends, has a way of revealing the core of the person affected by it. My mother’s core was rotten like the brackish water at the bottom of the weeks-old vase of flowers. She had been beautiful when my father met her and still capable of love when I became their late-in-life child, but by the time she gazed up at me that day, none of this mattered.”

The first paragraph in Alice Sebold’s novel, The Almost Moon, hit me in the gut. A frustrated daughter relieves her mother’s suffering while also setting herself free from the pressures of caring for someone who no longer recognized her as her daughter.

But this is a novel. This is not real life. As soon as I finished the book, I sighed and silently asked the unthinkable, “When will we see a headline about a daughter ‘relieving’ her mother of suffering?”

And then this article appeared. Is that what this is about? When we see a mother-daughter murder-suicide in the news, alarm bells ring. I discussed this with Dak and these are our thoughts in his words:

 

It’s just one case, right? It’s not like this is happening all over the place. This is not an epidemic. It’s just a weird thing is what it is. It’s an isolated incident, that’s all.

And yet, there is a whole lot of mystery to this that opens out into many possible worlds. This story offers very little detail. The authors won’t speculate. This one will.

I can imagine reasons for this happening from many angles.

The mother had a dread disease and no one would listen to her except the daughter who decided to act to alleviate her mother’s pain and then couldn’t live with herself.

The tyrannical mother finally became weak enough for the abused daughter to overpower and kill. Then killed herself.

Sorrow at loss of being useful.
Sorrow for being a burden.
Without hope.
Interior demons hide in the dark and they look like competence to everyone else.
Despair. So many reasons for despair.
Why did she choose a gun?
A belief that there is a better afterlife.
The weight of living is too heavy.
Too much of a burden on the ones you love.
Too much of a burden on the country you love.
Loss of community to death, to convenience, to entertainment and long distance.

What are the solutions here? How do we feel when we read a story like this? I feel my mind reach out to try to comprehend what happened, but why? Do I think I might become a woman whose mother is still alive and have to face this situation myself? No. But I can imagine how it could have felt and I think it would have felt pretty bad. No matter what the story behind the people is, at least one of them was suffering and had no relief in life. We can moralize about her choice, but that doesn’t seem like a solution to me. I feel that it’s wrong to kill, but happy people have no reason to kill. A satisfied society is a safe society.

So these two…hey one of them lived to be 93. That’s some persisting. I don’t think people live to be 93 without figuring a few things out and my feeling is that she had a good way of coping with stress, one that worked. Her daughter made it to 60 and that’s saying a lot as well. (I know we’re not supposed to be impressed with how long we live now compared to the entirety of our previous existence, but I’ve been watching “Cosmos.”)

She was suffering and we were in no position to offer relief. I think the fear is that one day we will be suffering in such a way that we need help for relief and it doesn’t come, or it’s slow to come. What kind of help?

We seem divided from our heritage. We have social media instead of being social, and I think many of us are fooled into thinking that the two are equivalent. There will always be suffering, but what if we were so kind to each other and considered ourselves together as a body rather than individual and separated pieces that we all shared the suffering so it ceased being so awful to any one of us?

I think it’s easy to forget that there are solutions to our problems and they are going to be found whenever two or more of us gather together. Remember who told us to do that? Again here it is easy to get hooked into the story, but the story is alive in us. We are telling the story of ourselves right now. I know I’m not alone in preferring kindness to suffering.

Dak Gustal is a freelance writer and poet living in Randoph, VT. You may contact him at st.augustus@gmail.com

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 »

Not gonna be a Christmas Angel this year

Happy b-day Kari and Jesus003 - Version 2

1982 and my cake read “Happy Birthday Kari and Jesus”

It’s the holiday time. Oh goodie. Time to gather the family. Whether you like each other or not is irrelevant. We get together because we’re supposed to. Ads on TV and pictures in magazines of smiling, beautiful families (cast in the most traditional roles) surround us, and even though I yearn to be a part of those pictures, that is not my reality.

I worried at family gatherings that my mom would drink too much. I fretted that my sister would say something that would cause mom to cry. I brooded over the fact that, even though it was my birthday on December 25th, this day was not about me. Instead of birthday presents, I received Merry Birthday combination gifts. And they were never more special than what everyone else received.

Those feelings and memories seem so trivial when I consider what I have been given. But to a young girl, those memories created the limiting beliefs I now embody: “Everything will be alright if I don’t make a fuss or say what I want. My job is to monitor how others are feeling, to consider what, if anything, I need to do for them, and put my needs aside. (How selfish to consider my needs when there are so many other needs out there.) And my endless confusion over wanting special gifts but feeling that wish is selfish at the same time.” I’ve always figured I’ll deal with what I want later.

Later rarely comes when you’re taking care of other people’s feelings before yours. I scan a room and take the temperature of how others are doing. I then decide how I need to feel based on the feelings of others. Just writing this makes me realize how crazy this is!

So I’m stuck in stage one of “Emotional Slavery”: believing I’m responsible for the feelings of others. As I dig deeper into the work of Marshall Rosenberg on Nonviolent Communication, I begin to put more intelligent words to the feelings I’ve carried for years. If others aren’t happy or don’t appear happy, I am compelled to do something. To fix the situation at the cost of ignoring my needs.

This is what I learned being a child of an alcoholic mother. I learned to enter a room cautiously, to look for potential danger (generally disguised as a thermal glass that smelled of pine needles), and to either tiptoe past the room or engage in cheerful conversation about mindless things or cut myself down in an attempt to raise her self-esteem. As if I could.

I continue doing this today. Only now I do so with my partner. I measure his mood before I either share news of my day or stumble through an uncomfortable conversation because I’m not stating what I need; rather I’m attempting to “make him feel good.” Whatever that means.

This is a crazy making! And after doing this for nearly 50 years, this way of life feels so normal that even thinking of making a change scares the hell out of me. If I speak my truth, I will hurt others and will cause pain and will be a bad girl. So I skirt around my truth. I say, “I don’t know,” when I really do know what I want. If I am honest, people will think poorly of me, “How could she be so selfish?” I clumsily try to take care of myself, but more often than not I slip backwards into this dysfunctional normalcy that makes sense and feels familiar.

And why does this all have to come to a head at the holidays? Is it the darkness that draws me naturally to examine my interior? Is it the body memories of a sour stomach every December 25th as my mom, sister, and grandma reprimanded me for feeling sorry for myself? No doubt it’s that and knowing that once again, I enter the holidays with too little money, too little work, and an unsettled feeling about my role in the world. And I feel ashamed of feeling these thoughts. It’s the holidays, for criminy sakes; cheer up!

We have a placard on our fridge that reads, “Notice! The beatings will continue until attitudes improve.” Seems to fit with the ridiculous pressure many of us embrace in the journey to becoming “a better person.” I see the issues that need attending in my life. I uncover ugliness about myself. I read about healthy communication tools, which I clearly lack in my attempts to express myself. Instead, I understand expressing my needs as selfish. And once again I want to run away from the burden of being a conflicted “Christmas Angel” (as my mother named me) and go off to some deserted island and forage for my holiday dinner. At least that way, I wouldn’t put anyone in the awkward position of having to do something for my birthday.

Having struggled with these feelings for much of my life, I often feel that people are just plain sick of Kari’s issues. “Get over yourself!” I hear people say, even though their mouths aren’t moving. And if I could find that magic eraser to remove the etchings in my bones, I would have already cleared out the messages and moved on. But that is not where I am. I am, once again, facing a past that is messing with my present and clouding any future dreams.

I even played Jesus in clown worship.

I even played Jesus in clown worship.

It’s the holiday time. Whoopi. Even my attempts to decorate the house fall short of my expectations. I’m trying to embody advice from others (and advice I’ve been known to dole out): Be gentle. Be kind. Be real. Whether or not you choose to spend holidays with your family or feel you have no choice, be present to what is. I can recognize reality and not have to like it. Reality is what it is. And for this Christmas Angel, reality is that I am unsettled, restless, and searching. I don’t like it, but it’s where I find myself.

How about we not fight with ourselves this holiday season? Huh? I’m going to try to be present in the moments, accept and love myself as I am, and create pockets of time to meditate, do yoga, and hike outside in the cold. The best gift I can give my family, friends, and the world is to be healthy. Instead of being an angel this year, I will strive to be as real as I can, with as much kindness as I can muster.

Poetry in Caregiving

Over the years Dak (a.k.a. my brother Steve) has given me a most treasured gift: his love through words and friendship. I am grateful that we are a sister and brother duo that has grown up sharing similar interests and friends. We played well together as young kids (even though I broke many of his “toy” sticks just to make him mad), acted in high school plays and marched in band at the same time. While living in Denver, CO, he sang in a church choir that I directed (often times teasing me before we sang by mouthing to me, “What are we singing?”) Today we are uncovering ways we can combine our talents to further the understanding of family caregiving and aging. I am blessed to have such a wise and loving brother on my team. It is my honor to share his thoughts about the month that is now closing and the journey of family caregiving. Read more »