Tag Archives: Kari Berit

Why it’s important to hold a family meeting

I’ve been involved in several family caregiver meetings, including one with my own family when my Grandpa Gus needed care. My goals were simple: Air emotions and make a plan. I opened the meeting by having us go around the table and check in. After each person was able to express feelings, we made sure everyone was clear about grandpa’s diagnosis and what he needed for care. We then allocated the tasks among us. Even though the tasks didn’t end up being accomplished exactly as assigned, it helped to have everybody aware of how much needed to be done. Here are some of the things you and your siblings may be called upon to do:

  • Help with activities of daily living (bathing, eating, getting up, using the bathroom, dressing);
  • Drive to and from (whether to doctor or social activity)
  • Organize medication
  • Financial help
  • Assist with housing (from housekeeping to finding a new living situation)
  • Manage insurance and health care
  • Shop, do laundry, cut grass, etc.
  • Use technology to make life simpler (but more challenging for you to re set, explain, update your parent’s devices)
  • Advocate for your parents
  • Understand any disease, so that you can be a better caregiver
  • Support each other and yourself

I remember facilitating a family caregiving meeting for five adult children and a number of support people. The primary caregiver was tired and wanted her siblings to understand that, by keeping their father on life support, they were not only going against his wishes, but also extending her role to the point of exhaustion. When two of her siblings said that she didn’t need to be at the hospital all the time, she was furious. “Who’s going to catch the mistakes?” she raged. “Who’s going to hold dad’s hand? Who’s going to catch the doctor when he comes by if I’m not there?”

Her need was to be heard and understood, especially when she felt the rest of the family was going against their father’s final wishes. But her siblings needed her to understand that while she had taken on the primary role, it wasn’t an exclusive one. Just as she needed to be there, they also needed to be able to help out and be involved in their own unique ways.

It’s worth noting that even if you’re prepared to play the primary role, it may not always be what’s needed. I could not have taken care of my mother full-time and it was not the right spot for me to play lead with my sister’s care. Don’t let your ego get in the way. Examine the family dynamics and choose the best person for each role. Get in touch if you need help.

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.

 

Family drama played out as adults

Siblings Spring 2017My siblings and I are together for a week. It’s a great big mix of fun and confusion. It’s as if we’re back at the dining room table in our childhood home, resuming the roles we played as children. Unresolved family issues simmer just below the laughter, ready to take center stage when the joking subsides.

I have always felt like the black sheep with my siblings but during this trip, I’ve learned that we each, in our own way, feel like “the odd one out.”

It’s not easy to come together as adults and deal with emotions that accompany diseases, aging or family caregiving. For many of us, navigating the rough waters of our childhood was challenging enough. I’ve worked through a lot of my childhood trauma, but still find it difficult to hold on to this new-found strength when in the company of my family of origin.

Our families are the first hierarchical institution we experience, the place where we feel most connected, but sometimes also where we feel most limited. Think about dinner times—where you sat and how you interacted with your family. That scene is recreated when we come together as adults to deal with heavy-duty life issues, oftentimes without the benefit of training. We simply use the limited skills we gained as children and clumsily apply them to adult situations.

I have leaned on the SANE Method™ once again, feeling supported by asking a friend to lunch, feeling appreciated by making time for walks in the woods, letting go of guilt by reminding myself that I’m doing enough, and feeling energized through getting enough rest. We can’t always have easy times with our families of origin, but we can have sanity, and that is in your hands.

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

It’s time to have The Conversation with Mom and Dad

It was probably one of the most important and treasured conversations I’ve had with my in-laws. Granted, my husband’s parents are pretty special people. They read three newspapers a day, several books each month and discuss world events. They tackle health issues head on and look for solutions and support, rather than dwell on any setbacks.

On our last visit, they sat down with my husband, John, and me, and read aloud each of the points in their Advanced Healthcare Directive. Both John and I have worked in senior housing and have professional experience helping families come to grips with end of life care. I’ve filled out my own health care directive, talked about end of life on my radio show and during presentations, and have been a part of my own dad’s planning process. But we’re older now and our parents are older. It is highly likely that any of our four parents will eventually utilize a health care directive.

two people talkingI can’t lie: It’s not necessarily an easy process, but it is profoundly rewarding. If we hadn’t read through my in-laws wishes, we would have missed several crucial details. Among these is that they do not want Hospice to come into their home. They would prefer to move into a Hospice facility. John and I thought for sure they would want to die in their home, but they have their reasons for not wanting this and now their wishes are quite clear. We know very specifically what care they want in the later stages of their lives.

Yes, we’re talking about end of life when filling out an advanced healthcare directive. But we’re also looking at how we want to be cared for while we’re still living. If you haven’t yet broached the topic with your parents, give it a try. Use my example. If they don’t want to discuss end of life issues, let it go, but try again another day. And while you’re waiting, fill out your own directive. You may just gain rich insights into how you really want to live.

Shut off you panic response and color

In the mid 1990s when assisted living communities were first popping up and I was an activity director, I was told that coloring was not an activity for older adults. It was childish. Period. Well no more! 2015 was the year of the adult coloring book. You can’t walk into a bookstore or art store without running into a display of adult coloring books and accompanying supplies.

It may seem a bit awkward to color as an adult, but the simple benefits of focusing on one thing will help you tame that part of your brain that thrives on stress: the amygdala. When you worry about your mom’s last doctor visit or your dad’s ability to bathe himself, your amygdala revs up and encourages you to worry more. With an amygdala out of control, it is nearly impossible to make decisions that will benefit anyone.

You never know when you will need to turn off your panic response, so why not
carry around something to color. While waiting to board a flight, a fellow passenger told me about her tricks for surviving a transcontinental flight. She not only had a coloring book of the AmsteMandala-150x150rdam canals, but a full set of travel color pencils and a sharpener. She was prepared for travel stress—missed flights, long lines, bad food—because just like caregiving, there will be stress in travel.

A clinical psychologist at the Cleveland Clinic suggests that when we are focused on coloring, the distractions of our own lives evaporate into the background and allow us to be totally in the present. When we reduce mind clutter and distractions, we address caregiving challenges in a spirit of “let’s find a solution” vs. “nothing will help.”

I know how uncomfortable coloring may seem to many of you. It felt strange to me at first, too, but when I finally tried it some years ago, I found it to be both mesmerizing and rewarding. It’s a solo activity to help you find peace of mind and it can also be something you do with your loved ones. Sometimes simple conversation is stressfull. In those times, coloring separately can ease the stress, but still allow you to share time together doing the same activity.

Make it simple on yourself and start by downloading coloring samples. Open your mind and allow yourself to just color. See if by tuning into coloring, you are able to shut off your panic response. And remember, it’s not necessary to stay within the lines.

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!

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.

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.

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.

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 »

Yes. The Holidays™

I’ve heard from many of you in response to my last blog. My heart goes out to all of us who find this time of year less jolly and more complicated. My wish is that we each find our own version of Santa belly laughs. (The coffee shop in which I find myself just had TWO Santas come in. That was confusing. Not so much for the babies, but for me. How can there be two?)

I give you Dak and his creative version of The Holidays…now a brand.

By Dak Gustal

Part 1. In which I set out this year toward Christmas instead of away from it.

For ten months of the year, The Holidays™ are ridiculously easy to survive.

Just outside the Denny’s parking lot in Big Eel, two normal people enjoy a conversation about Christmas from the safety of September:

old coupleEdith; Christmas? What’s the whoop?

Corwin: I know, right? What’s the big whoop?

Edith rattles her free weekly newspaper already blossoming in holiday style

Edith: How would we fall for fake Christmas anyway?

Corwin: I don’t know, right?

Edith: ‘S so stupid!

Corwin: Ridiculous!

Corwin stands, pulls himself to his full height, clenches into a knot then releases a stream of curses across the park at an offending red squirrel. He then resumes sitting in the exact spot the same way, as if nothing happened. Edith does not seem to notice.

Edith: You’re not gonna fall for it this year?

Corwin: I don’t know. No, right?

Edith: I’m just going to enjoy the season for what it is.

Corwin: Yeah! Just enjoy the season for what it is.

Pause.

Edith: It’s about love and peace and joy to the world and stuff. It’s no big whoop!
Corwin: I know, right? What’s the big whoop?

Part 2. In which I begin to realize the flaw contained in Part 1.

It’s December. Krampus, in the form of Our Hero’s Life Partner, explains exactly what the Big Whoop is all about:

Krampus : What’s the big whoop! I’ll tell you what the big whoop is! I got Santa infesting my brain and you don’t have any Santa in you at all and I keep getting things for Billy but Sally just has the one thing even though it’s a big ticket thing and who knows what Kevin thinks about anything, he’s so full of…

[We interrupt this Important Diatribe of Complaints to remind you that when you need to get into The Holidays™ Spirit nothing says “I love you!” like The Holidays™ Spirit of The Holidays™ 64 Calorie Tribute to The Holidays™ Holiday Nog. Get yours today!]

…when she pulled the whole tree down on top of her which is why you always have to put the biggest…are you even listening?

Hero: I wasn’t listening, but now that I know a very good reason to not ask about the whoop anymore, I was wondering if you were going to get to the part where we all come together as one big happy family and the snow falls gently outside but inside everyone is warm and happy to be together and everyone got what they really wanted which was to be seen and heard and enjoyed and cherished and to love their lives and the life you live with the people we love.

Little Girl: But the people we love are often terrible people when they’re around people that love them!

Her Brother: And as it turns out, you’re the worst one!

Uncle in the back: It’s a cultural thing!

Woman in red hat: I blame the ads!

All in Chorus: Yes! Ads are making The Holidays™ conform to their will!

Dad, pounding the table solidly, once: That’s enough! Out All Of You.

Part 3. Total Defeat. Keep Eating?

In the silent aftermath, over the soft grunting and chewing and scraping of silverware on bone china, you can hear music low in the background. Familiar, intricate music designed to hone time to the singular emotion we are all expected to share and overcome; the music always there in the background of The Holidays™, hearkening heraldic angels to sing over and over again. And once more.

The Holidays™ brought to you by It’s Just What I Always Wanted!™ For Men™
Available now everywhere!

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

 

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 »