Tag Archives: adult children

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.

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.

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.

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™

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.

 

 

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 »

Caregiver support online

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

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

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

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

Money, Age, and Big Foot

Recently I posted a question on Facebook asking for top issues when it comes to caring for Mom and Dad. One response was: “I hate trying to make sense of their finances & realizing, by looking through checkbook registers for instance, that dementia was grabbing ahold of my mom much earlier than I realized.”

There are different types of loss. When dementia takes hold or death comes too quickly, financial issues tend to scream for your attention. Right in the middle of dealing with emotions, you need to tackle financial concerns.

I interviewed Aaron Britz of Legacy Wealth Management recently. He specializes in helping women gain financial control during a life transition, such as loss of a loved one. The interview is both upbeat and informational and could be just the ticket for moving you from fear of finances to getting a grip on this often times emotional issue.

And for a completely upbeat and upside-down look at financial issues, I call on Dak Gustal. Be wise…bite off these financial issues and if you want support, contact me. Now, here’s Dak: Read more »

The Law Says Call Yer Ma

How other countries handle family caregiving is often in the news. Especially if it’s shocking…as in the case of China and India. Dak Gustal approaches the issues with his usual flair.

By Dak Gustal

Why would a country want to make a law that says children have to take care of their parents?

I was just reading this article about two giant countries in Asia doing just that. Apparently the children are so negligent, the parents are suing them for weekly phone calls. Can you imagine talking to someone who was only talking to you because the law required it? Read more »

Ew! Nanna and Pappa should not have sex

By Dak Gustal

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

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

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

Dying Gone Haywire

“Ask for help” and “Who’s on your team?” are two common phrases you’ll hear me say when it comes to caregiving, aging, or heck, just living. Taking my own advice, I called on my talented brother, Dak Gustal, who will offer fresh, humorous perspectives as an occasional guest blogger here at The Unexpected Caregiver. Please share this and other blogs. 

SteveBy Dak Gustal

The original story is called Woman Headed to Trial for Aiding Father’s Suicide.

That’s not that interesting.

Then it became: Boomers beware when caring for dying parents.
Now you got me.

This is my headline: Boomers! Bam! Pow! Yeah! Beware! Scary Parent! Run!
Perfect.

This has all the elements of a great story. I think there’s redemption coming. Read more »

Three Taboo Subjects to Raise with your Aging Parents

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

Is Assisted Living a Dangerous Place to Live?

The PBS Frontline special “Life and Death in Assisted Living” has sparked a great deal of chatter on social media. Assisted living (AL) is not regulated like nursing home care (or SNF-skilled nursing facility), but do we want it to be? Regulations tend to put the kibosh on creative offerings.

One of the initial definitions of assisted living was “living with risk.” When I first worked in the industry, folders replaced charts; aides didn’t wear uniforms; and med carts never entered the dining room. Buildings were designed to look like country mansions with grand staircases (that residents were discouraged from using).

Assisted living in 1996 was designed to provide some assistance in a home-like setting. As people have aged in place, AL has become a less-regulated version of a nursing home. While the industry markets these communities as homes, they refer to them as facilities. Who wants to live in a facility?

As for staff being overworked, underpaid, and under-trained, I agree. Years ago my partner and I started our company Age In Motion, Inc. We designed programs to address the issue of assisted living staff that was (still is) underpaid, undervalued, and under-trained. We created a staff training that not only motivated the staff and reminded them of their importance, but also taught them about normal aging, diseases that cause dementia, family dynamics, and activities that engage individuals and groups.

I thought we’d be in demand … that everyone, especially senior housing, would want this training. Sadly, most choose to ignore aging until it happens to someone they love, then the cramming begins. But where do you get the information?

This is why I do what I do and have done what I’ve done. Let’s talk about this thing called aging, engage in understanding what happens to us as we grow older — the ups, the downs, the good, the bad. This is the package. This is why I started The Unexpected Caregiver radio show four years ago and have a mission to syndicate it throughout the US and world.

The conversation is long overdue, but it is not distasteful to have. Aging and taking care of each other is not distasteful. And if we learn about aging, plan for our aging years, research our options, we will have a better understanding of what is to come.

No, assisted living is not dangerous. It is as misunderstood as the journey of aging.

I don’t need training. I know my Mom

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

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

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

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

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