To all-housekeeping staff, food service workers, aides, nurses, office workers, and everyone else who provides care to others:
Tag Archives: caregiver
When you want to visit your parents, but they’re in Corona Virus lockdown…as are you.
You thought making the decision to move your parents into senior living was tough? Not being allowed to visit is ten times harder. Most senior living communities are locked down due to the Covid-19 pandemic. No visitors, which includes family members. The original reasons for having your mom or dad move into senior living haven’t changed, but since then, the world has changed. The idea of not being able to visit feels unfair, even mean-spirited, yet it is imperative during this pandemic.
You have the same feeling as when you were little; you want your mom or dad to be with you in times of uncertainty. Of course you want to see them. I want to see my dad, too, but because of Covid-19 travel restrictions, I won’t be making my regular visits in the foreseeable future. This means I won’t be able to see or hug my dad, or resume our cribbage tournament. We have had to find new ways to “see” each other. Although he resisted Skype at first, we are now enjoying our electronic visits. During one call, I was eating chocolate and my dad said, “I’d like a piece, too.” To which I answered, “Too bad; it’s all mine.” We laugh and talk seriously. We share programs we’re watching, books we’re reading, and walks we’ve taken. It’s not the same as in-person visits, but as my dad always says, “These are the cards we’re dealt.”
We’re all navigating very uncomfortable times, and to top it off, the care of your loved ones is in the hands of the senior living care team, people who may still feel a bit like strangers. How can they love your parents the way you do? They’ve only known your parents for a couple years, while you’ve known your parents for a lifetime.
I’ve worked as a manager in all levels of senior housing and I know that the professionals who look after your parents grow to love their residents—your parents—unconditionally. They become a second family. The news often reports on the negative aspects of senior housing, and there are issues, I understand that. What is not reported are the mundane, day-to-day interactions that staff members have with your loved ones. The countless smiles they exchange, the warm greetings heard in passing, and the endless patience in listening to familiar stories shared, perhaps many times. The list goes on and on.
Senior living is not perfect. Home care is not perfect. And certainly, you taking your parents into your home at this point would not be perfect, either. It’s too easy to question everything during a crisis, even decisions that were soundly made.
When we come out on the other side of this pandemic, we probably won’t be returning to normal. As with any change, we will create a new normal. Connecting with my dad electronically will be part of that. I see senior care communities also using technology, or doing something as simple as setting a chair by a window, so that family members can visit with only glass between them.
For someone with dementia, this type of virtual visit can be complicated or confusing. Before the crisis hit, I helped move a man into dementia care. His loving wife had reached the end of her ability to provide care, and even though she knew this was the best decision, it was still extremely hard.
Now she can’t physically visit him. Both she and the community where he lives are in Covid-19 quarantine. One of the creative ways she has been communicating with her husband of 60-plus years is sending large-font emails, complete with pictures, to the activity director. The staff then prints off the emails and after reading them aloud to him, leaves them by the bedside. This allows her husband to “hear” her words as many times as he chooses. Because of his dementia, he may not always understand his wife’s words, or why she isn’t physically there, but I trust something reaches him. Hearing her familiar words will touch an emotional cord even if he’s unable to acknowledge their effect, out loud.
We don’t know whether or not people with dementia understand lockdown due to Corona virus. It’s not a very digestible concept for many of us either. There is no need to “make them” understand or explain why you can’t visit. What is important in these trying times is to trust that the team of people who we consider essential, is caring for your parents. They are taking necessary precautions to keep your loved ones safe and disease free. And most importantly, many of them love your parents. It’s not the same love that you have for your parents, but it is a kind and patient devotion.
We will get through this, even if the “new normal” hasn’t yet been determined. In the meantime, it’s important to remember that something as insignificant as a phone call to your loved one can make a world of difference for both of you.
My daughter just suggested we start a petition to “remove February and even the first and last weeks of March.” I imagine living in one of the sunnier regions of the world would make life easier during the winter months, but still, February and March seem interminable. The festivities of the holidays are long behind us, spring seems like it will never appear, and frankly, life feels sluggish. Winter seems endless. In a nutshell, this is how long-term caregiving can feel, like you’re stuck in a ‘never-ending February.’
Instead of fighting the February blues, I have been inviting surrender into my life. I returned to one of my favorite poems to remind me once again of how to “be helpless, dumbfounded, unable to say yes or no.” The poet Rumi talks of allowing “a stretcher of grace” to scoop us up, trusting that when we surrender, “miraculous beings come running to help.” I think a little magic is just the ticket, especially in the ‘February times’ of our lives.
Be helpless, dumbfounded,
Unable to say yes or no.
Then a stretcher will come from grace to gather us up.
We are too dull-eyed to see that beauty.
If we say we can, we’re lying.
If we say No, we don’t see it,
That No will behead us
And shut tight our window onto spirit.
So let us rather not be sure of anything,
Beside ourselves, and only that, so
Miraculous beings come running to help.
Crazed, lying in a zero circle, mute,
We shall be saying finally,
With tremendous eloquence, Lead us.
When we have totally surrendered to that beauty,
We shall be a mighty kindness.
I think most of us have heard about the fable of the boiling frog: If you drop a live frog into boiling water it will jump out. But placing a frog into tepid water and slowly increasing the water temperature, and the frog perceives no danger and is slowly cooked to death.
This is often a fitting metaphor of what happens as we start down the caregiving path. We can’t imagine putting an adult diaper on our husband, but incontinence creeps up and soon we find ourselves searching YouTube videos on how to change adult depends. Incrementally, the barriers are being broken down, and what we once said, “I draw the line at,” we find ourselves doing. We never dream we’d be cutting up our loved one’s food, let alone feeding them.
The truth is, much like the frog in the fable, these changes don’t all-of-a-sudden happen. Over time, we adapt to many changes and we enter into a series of “new normals.” What once was unthinkable has now become “just how it is.”
At the same time we are adjusting to the new normal, our stress levels slowly increase. We may be eating more often and less healthy food, exercising less in favor of another hour of sitting in front of the tube. We stop dining out because it’s embarrassing or just too difficult. We don’t invite friends to visit and we stop reaching out. Isolation creeps in and we just can’t put a finger on why we’re feeling gloomy.
I wish I had a magic pill I could give to the thousands of family caregivers who are beating themselves up because they feel they need to handle all the care on their own. This pill would do two things: First, it would engage the left-side or logical side of your brain, sending you the clear message that you are doing everything you can, to the best of your abilities. The second thing this pill would do is ignite your inner self-worth and trigger the message that self-care is vitally important. How can you be prepared for the emotional toll and strain of witnessing your loved one fade?
Unfortunately, I can’t offer a magic pill, only my encouragement to be both gentle with yourself and to ask for help. You are The Unexpected Caregiver. Learn all that you can, lean on others, and understand that small changes will creep up on you. Be prepared to have someone close to you point out that the time has come for you to seek professional help. Don’t be the frog who unknowingly drowns because it got used to the heat.
Article first appeared in “Southern Minn Girlfriends”
My friend sings instructions to his wife with Alzheimer’s disease. I hear her giggling and then I start laughing and before you know it, the three of us are totally in the present moment. We’re not thinking about her bowel movements or when she’ll start wandering or whether she’ll find her meds we’ve tried so hard to bury in her yogurt.
There’s a lot about giving care that is neither fun nor funny. Helping your parents and loved ones will test your balance and stamina. It will stress your spouse, your family, your work life, perhaps even your basic sense of self. Sometimes, it will bring you a level of joy that will surprise you. Other times, it will bring you down.
Have fun with the every day tasks. When my friend showers his wife, he announces her exit from the bathroom, “Make way for the queen.” Don’t take it personally when a loved one forgets who you are. I had one client join me and his wife at the kitchen table. As he sat down, his wife turned to me and asked, “Who is that?” Without hesitation, the husband said, “It’s me, Tom, your husband.” The wife looked at me with wide eyes and said, “Another Tom?” And we all laughed and agreed that another ‘Tom’ would be a lot to handle.
It’s okay to laugh, as long as you’re laughing with them. They haven’t lost their sense of humor. When we laugh, we are playing. When we are playing, life is fun…and that makes all the difference.
The Hospice nurse suggested she had one, maybe two, more months to live. I knew this was coming, but I was not ready. But when would I be ready to lose the woman I call my BFF—Best Friend Forever?
She and I met in high school chemistry class. We passed notes to each other and sang the same wrong words to Phil Collin’s “In the Air Tonight.” We enjoyed preparing for prom way more than the prom itself. She is the one who has explained life’s little subtleties to me. In many ways, she has been my stronger self.
I remember falling apart sophomore year in college. I drove many of my friends away, demanding too much from them. But not her. Not my BFF. When I showed up at her dorm room in tears, she held me, cried with me, and listened to the recap from my recent therapy session. She also rescued me when I was out way too late at night and needed a quick French braid in order to be presentable for a choir performance.
The author of Still Alice brought Early Onset Alzheimer’s disease to the big screen. Lisa Genova, a neuroscientist, wrote a touching story about a university professor who, at an age we don’t normally expect, developed Alzheimer’s. I interviewed a 40-year-old man on my radio show who also had Early Onset Alzheimer’s disease. He described how exhausting it was, going from one doctor to another, trying to get an accurate diagnosis.
When my friend started showing symptoms, we had each turned 50. Both of us were feeling more forgetful than usual and more emotional than normal. Another radio show guest I interviewed was a medical doctor specializing in hormonal changes. I was thrilled to interview her, and couldn’t wait to call up my friend to report, “I think we’re both going through perimenopausal changes. Not to worry!” We spent a lot of time on the phone talking about natural supplements that could help, and whether or not we should seek hormone replacement therapy.
Then on one of my visits, my BFF asked if I wanted a cup of tea. I watched her hold a cup, take out a tea bag, look back at the cup, and then at the tea bag several times, before finally placing the teabag in the waterless cup. The simple act of making a cup of tea had become a confusing task. As I watched her, I thought to myself, “Oh crap…this is not just hormonal changes….”
When she eventually received the diagnosis, she was already struggling with finding words and making change from $20 bill. At one point a woman approached her in a store and said, “I love your jacket; where did you get it?” My friend just stared at her and I jumped in and said, “Oh you’ve had that jacket for a long time.” I looked at my friend, “I don’t remember where you got it,” I continued, nodding at her while holding her around the waist.
Like she filled in the blanks for me, explaining what certain phrases or words meant, I was now responding for her, helping her “be normal” in a world that doesn’t know how to recognize a young person with dementia who may not be able to respond.
My dear friend died Aug 17 surrounded by her family. I was in the air, returning from taking care of my mother in law. My goddaughter picked me up at the airport and tenderly told me of her mother’s passing. I was able to say goodbye to my BFF’s body and help wrap her body in a sheet. Another layer of grieving now begins.
I will miss her tremendously. Her father recently said to me, “Thank you for your years of friendship with my daughter.” I am grateful that she chose me as her BFF.
Five college students filled my kitchen with laughter and conversation over a leisurely summer breakfast. Only one of them was non-American, the other four were studying at the same college in Minnesota. I asked each of them what they would do if one, or both, of their parents needed care. The non-American, a lovely Russian woman who happens to also be an only child, said she would absolutely live with and care for her parents; “That’s how it’s done and I’m very close to them.” The other four were less certain: Would they have their parents move in with them, or find some type of senior housing? “We haven’t thought of this.” Why would they? They’re 20-something and their parents are “still young.”
I’ve been presenting on the topic of family caregiving and aging for nearly 30 years and still, family caregivers wonder why “no one” is talking about it. The press reports on the critical need to prepare more people to be caregivers, but the subject of providing care to an elderly loved one remains a subject swept under the carpet, or generally ignored.
Growing older is not a sexy subject and hence, doesn’t get the press it needs. Yet aging happens to all of us. If you don’t like it and try to avoid everything about it, how will you give care to an older parent? You have to love your own aging self in order to be loving towards an older adult. It’s way past time to think about caregiving and aging. Maybe we need to introduce aging and family caregiving into our public school system. Without some major change, I fear the impending silver tsunami will drown us all.
Good grief! I took an extended break from sharing my thoughts in blog form. I am a speaker first and an author second. Writing down what I can easily express from a stage or over airwaves, takes more energy. I gave myself “time off,” and now that I’m wanting to return to my blog, self doubt creeps in about my ability to write.
Dread of the words—
that’s something I’ve learned.
Verse I have written
and verse I have burned.
From the doubt in my heart
the cruel whispers start:
“Weakling, you write
with a borrowed art.
The sheet is most lovely
when it is white.
Save its space for the word
that you cannot write.”
I stumbled across this poem by the Norwegian poet Hans Børli. When he writes about writing as “borrowed art,” I imagine many family caregivers feel like they are giving care with “borrowed energy,” “borrowed time,” or even “borrowed love.”
The outdated aphorism, “Fake it ’til you make it” has a place both in writing and in giving care. Neither caregiving nor writing are about being perfect; rather, each has more to do with expressing from the heart. As I venture back into my blog, I hope my heartfelt words encourage family caregivers who often feel at a loss. Sometimes the blank page or, as many of my caregivers relay to me, the blank days, can be overwhelming. Move past your self doubt. Dive in.Try something new. Remember to stay S.A.N.E.™
S.A.N.E.—Supported, Appreciated, Not Guilty, and Energized
I was married to a hoarder. Not only was money spent on collecting things that didn’t get used, but it took a lot of money in therapy to work through what the accumulation of unused stuff was doing to us as a couple.
As my mom became more debilitated from Huntington’s disease, leaving the house less and less, she started filling her home with stuffed animals, music boxes of all styles, and a myriad of Norwegian knick-knacks. I had to clear out the house after my mom’s death and let go of a lot of things in order to move to a smaller place after my divorce. Both experiences left me wanting less stuff.
Fast forward to three years later and I’m back to accumulating stuff, but with a consciousness that I didn’t have back then. I focus on re-using, second-hand, and trading. When I bring new clothes in, I remove ones I haven’t worn. (Okay, I admit, I lean on one of my step daughters to help me clear out my closet!) I’ve used three ‘M’ words to help me evaluate the stuff of my life:
- Mindfulness — Are your things taking up space and energy that could be used for other activities in your life? I notice this especially when I have to move certain items to reach things I’ve tucked away. Or when I can’t decide on what to wear because I have so many options.
- Meaning — meaningfulness or meaninglessness — If you’re holding on to things for no good reason, they hold very little meaning for you. I often look around at pictures I have sitting on my desk and shelves and ask myself, “Does this picture make me smile?” If it does, I keep it and if not, I repurpose or donate the frame.
- Maintenance — As we age, we not only have to maintain our bodies, but if we have a lot of things, we also need to maintain those. Freedom comes when we have less to keep up.
I hold no judgment on what and how much people collect. But please parents; don’t leave your garages full of “I don’t know what to do with this” for your kids to go through. Maybe if adult children clear out stuff on a regular basis, we can be role models for our parents.
We just passed the midpoint of January 2019. It’s not always an easy month—post holiday blues and “back to the same-old, same-old.” Here’s what I’m focusing on this year, this month, this day, this moment: Living SANE—Supported, Appreciated, Not Guilty and Energized. Whether you’re giving care, receiving help, or just living day–to-day, come out of your silo and live SANE:
- Supported is knowing when and who to call for help. Make a list of those trusted people who make space for you to be brutally vulnerable, who listen to you with no agenda, and who love you every day.
- Appreciated is living in gratitude and loving yourself. List all the things you love about your life and yourself. Keep that list handy.
- Not guilty is no regrets—being gentle with yourself even when you’re not functioning at your personal best. Gentle is a good word to post on your mirror to remind you to be kind to yourself.
- Energized is engaging in life physically, mentally, emotionally and spiritually. It’s your energy to give and keep. Make note of those with whom you have a happier, healthier, give-and-take of energies.
November is designated as National Caregiver month. I’m pretty sure caregivers feel like they need more than one month of recognition for the variety of jobs they take on day in and day out. I’ve spent my fall immersed in two different caregiver situations, both where husbands are caring for their wives. The three stories below are meant to help you remember that letting go is always important when giving care, and especially during the holiday season.
Situation One: A gallon of milk
My friend with Parkinson’s disease is too weak to lift and poor from a gallon jug of milk. Seems like a relatively simple solution: buy a smaller size container. But it’s not that easy. Sure there are numerous ways to solve this, but what one needs to take into account is the relationship of the couple. For many of you, we’re talking about your parents. They’ve lived together and operated as a unit for how-ever-many years. Their long-standing habit of buying milk in a gallon size container is too difficult to break. You may suggest a whole slew of alternatives on one visit, and then return for a second visit only to find the gallon-size container of milk. So the milk gets spilled all over the counter; it’s only milk. Don’t exhaust yourself trying to convince your dad that it makes more sense to buy in smaller containers. Heck, it may even be your mother who is making the buying decision and your dad simply wants to allow her that choice. Let it go.
Situation Two: Two right feet
Your mom comes out of her room and is shuffling a bit. You notice her shoes and see that she’s wearing two shoes that look similar, but are actually two different shoes. And she’s wearing the right shoe on her left foot. This is not a big deal in and of itself, but you may feel embarrassed for her. You’re going out and this once well-dressed woman is wearing one flat shoe and one with a heel. Your dad doesn’t notice the difference. But this one isn’t just about vanity; there is a safety issue to address. If one shoe has a heel and the other is a rubber soul, she could risk a fall. Can you get rid of one of the pairs of shoes? Can you talk with your dad and suggest he help her pick out a matching pair? Seems like reasonable requests. Have the conversation, but when Mom comes out with two mis-matched shoes the next day, let it go.
Scenario Three: Dementia and decision making
“It’s up to her,” said my friend. He was referring to whether or not his wife should have a three-step eye surgery that would return her eyesight to one eye. My friend is mixing up the details of the eye surgery with her diagnosis of Alzheimer’s disease (AD), saying, “There’s no cure, you know.” She’s right, but we’re not talking about AD, we’re talking about an eye procedure that would enable her to read again. You can try to talk with your mother, and maybe in the past it would’ve been a beneficial conversation. No longer. When a brain disease, such as Alzheimer’s, clouds her thinking there is no rationalizing. What makes this situation even more difficult is your dad. He is clinging to the past: Mom has always made her own decisions. Except now she can’t. She is unable. Her brain is not working in a way that allows her to digest facts and make rational decisions.
At some point, you have to let go of convincing either of your parents to change. Not easy, but necessary for your health. Find a trusted friend or a caregiver support group and vent, rant, scream, and cry. Let it out and then let it go.
Recently I made up a Caregiver To-Do list and to my surprise, audiences ate it up. It’s a simple notepad where you get to write down what you need help with. And then give it away when people ask, “What can I do for you?”
Let me know if you think this would more easily allow you ask for help.
Or tell me where you struggle in asking for help. People want to lend a hand, they just need to know what you need.
You know those days: You get in your car and hear a new noise (after just paying a hefty repair bill); you drive past your chiropractor’s new place five times before calling to have them describe their location; the pharmacy can’t find your new prescription, and your favorite coffee shop is closed due to illness.
These are what some people label “First World Problems”—They’re pesky, irritating, but not life threatening. They are just the type of issues that can take up precious space in one’s brain, derailing an otherwise sweet day.
Caregivers have to not only juggle their own “bad days,” but many have to learn how to recognize when their loved one is having tough time. This is not easy from a practical standpoint, let alone an emotional one. We see someone suffering and we want to “fix” their issue.
My grandpa Floyd hated to see us cry. He would swoop us up, make funny faces, wipe our tears and say, “It’s all right. No need to cry.” But sometimes a person just needs to cry, and this includes someone with Alzheimer’s or Parkinson’s disease, or someone in pain.
I wrote in The Unexpected Caregiver, “Through music, we can acknowledge that it’s okay for them [the person to whom we’re giving care] to feel sad, recognize why they’re feeling sad and then help them move through the sadness.”
Give it a try: if you are having a tough day, put on a sad song to match your mood, and then with each new song, pick up the tempo. Music can be your ticket to turning around a bad day for you or your loved one.
I needed something different this morning. The pressure of the mushrooming to-do list almost stopped me, but instead, I played a game with myself. I picked up Roger Housden’s “Ten Poems to Change Your Life” and randomly opened to “Ode to my Socks” by Pablo Neruda, translation by Stephen Mitchell (pdf link below). I’m familiar with this one, but as with most poetry, something new awakened in me this morning.
Pablo Neruda has the capacity to celebrate the things right in front of us. I have had an affinity with this poem in the past because my feet are covered in papery-thin skin. I have my dad’s feet; we’re identical feet twins. Socks are important to me and I wear good socks—especially hiking or working in the woods.
But that’s not what this poem is about. Neruda reminded me to slow down and take a moment. Breathe in what is around me and celebrate it. Stop for one moment, shut off my critical mind-chatter telling me to “get going,” and appreciate the everyday, normal things. Like socks.
So I sat on the porch, closed my eyes and listened—a variety of bird voices, an airplane far above, the buzz of a bee circling me, cow bells in the distance, the rustle of the birch leaves—just for a moment.
I thought of my S.A.N.E. Method™ for caregivers, “This is Appreciation—to take time for oneself, even if just a moment.” (And believe me, I fought a little with myself over taking this time. We have a list, after all! It needs to be accomplished!) But the gift I received from this moment was just like an inexpensive trip to the spa. I feel more settled, grateful and have a renewed sense of energy.
Today I took a moment for Appreciation; this is what I want family caregivers to do. Find some small amount of time and instead of falling into the habit of another glass of wine (if that’s your thing) or one more episode of your favorite sitcom (believe me, I enjoy getting lost in the familiar characters, too), do something that shakes you up, something you don’t normally do. Or something that you simply want to try. What you gain from your moment will be different from what I found, but I trust you will receive a bit of mind rest. And that could make all the difference in your day.
After a trip to Minnesota to see family and friends in need of care, I am reminded of the importance of telling others what you want. It’s hard to imagine NOT being able to speak for oneself, but I’ve witnessed a sister and a friend struggle to do just that.
This blog, albeit a bit longer than normal, appeared as an article in Girlfriend’s Magazine earlier this year. Read, enjoy, and then put your wishes to paper:
I had an exchange student from Norway in 2010-11. Henrik and I hit it off immediately. When he asked why I had chosen to have an exchange student, I jokingly replied, “I’m grooming you to take care of me if that day comes.”
Of course I was kidding with Henrik, but sharing my wishes has never been a joke. My Health Care Directive provides a good, basic overview, but like an excellent meal, I want my care team to pay special attention to ingredients that are unique to my tastes. If you find it challenging to write down your potential needs, may I recommend writing a letter? I think of letter writing as creating a recipe book for my care. The following is just one example of what such a letter can contain.
You asked that I let you know how to take care of your “host mamma,” because, after all, you will be one of my caregivers. (You do remember that we made a pinky-swear about this, right?) Ideally I will hold on to my faculties and you won’t need any of the information contained in these letters. But if the day comes when I need you to care for me, these letters will provide insight. (Of course I expect you to train the others on my care team.)
We had tons of fun when you lived with me. We sailed into the wee hours and slept until 10 on Saturdays. You know I love active, full days, but I’ve also grown to cherish my quieter days. Some days will even be sad. Let me have those times, mixed with spells of uproarious laughter and spontaneous kitchen dancing. I like to process my feeling and alone time is important. However, if I’m alone for more than three days, it’s time to get me out (or bring people in).
I may complain when you tell me you’re taking me out, but please persist. If I remain disconnected from others for too long, my depression can easily pull me into a very dark place. Take me to a coffee shop. We can talk, read, or simply people watch. Take me to a bookstore, even if you don’t think I can read. Let me wonder and sit amongst the books. Take me to a movie or on a drive with a stop for ice cream and people watching.
If you invite friends for dinner, don’t get so caught up in the conversation and forget about me. I could easily get lost in the rapid-fire conversations if I have dementia. Include me by simply putting your arm around me. Nod and say, “Isn’t that right, Kari.” It will be your job to help me feel connected, even if I’m not contributing. Don’t worry if I can no longer form sentences. If I’m smiling, then I’m enjoying myself.
This letter writing is a two-way street, Henrik. If you have specific questions or wonder about a specific ingredient in my overall care, please ask. And remember, you’re not to do this all by yourself. You must also take care of you.
Your host mamma
I am delighted to interview guests and produce my radio show. I also derive great pleasure from sharing my new book, The Unexpected Caregiver—How 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 Method™ to 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.
While waiting for a flight, I scanned The Times of London. The sidebar on page 14 read: “Dementia kills man, 40.” I was immediately troubled by how we continue to report dementia as a disease. Dementia is a general term for decline in mental abilities. Dementia happens because there is a brain injury or illness. The person mentioned as “one of the youngest reported to die from dementia,” had damage in his frontal and/or temporal lobes of the brain. That damage had caused the dementia, named “Frontotemporal dementia.”
Maybe it’s because I’m in the field of aging and family caregiving that I want us to have a better understanding of diseases that cause life-altering dementia. I wish that more people understood these diseases, especially as we’re seeing more cases in younger people.
Young Onset Alzheimer’s Disease (or YOAD) is often misdiagnosed as depression or simply “change of life” issues for women. I interviewed a man on my radio show who struggled for years to get an accurate diagnosis. He started noticing changes in his mental capacity at age 39 and his doctors came to the same conclusion: he suffered from stress.
I personally know people with YOAD and it is incredibly difficult to be in public with them. We simply aren’t trained in how to respond to older adults with Alzheimer’s disease and we’re even less prepared to handle awkward conversations with younger people who have YOAD. I remember being in a fabric store with a friend who has YOAD. Someone approached her and said, “I love your jacket; where did you get it?” That was too much information thrown at her far too quickly. She couldn’t answer. I put my arm around her and said, “I remember when you got this jacket, but I can’t remember where you got it.” (My friend shook her head in agreement.) I know it’s your favorite.” (And she again agreed with a smile.) The inquiring stranger accepted that answer.
When you suspect someone is struggling to communicate or if you know someone has YOAD, be extra kind, but don’t treat him or her like a child. If they can’t verbalize, help them out in the most supportive way you know how.
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.
Even 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 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.
I 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.
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 meaningful 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.
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 of 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:
- Watch a funny movie together (Dirty, Rotten Scoundrels is one of my favorites)
- Put on music from their era and dance (Nothing beats 50s dance music with my dad!)
- Reading aloud from a favorite joke book (I’m a sucker for Garrison Keillor’s Pretty Good Joke Book)
- 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.
I 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.
Ever since I was on swim team in junior high, I’ve understood the value of exercise. (That doesn’t mean I’ve always done it… just, I’ve understood the value of it.)
Since I’m not always consistent, I get it that many family caregivers drop their exercise time in order to fit in another care task. How can you change that and put exercise at the top of your list?
I can be very hard on myself for not doing “enough,” but let’s turn that around! Whatever movement you can get into your day is good. Did you ever see the Blue-Cross, Blue-Shield commercial, “Do Dance” that introduced the “Do Groove Guy“? This commercial aired in 2004 in Minnesota to encourage people to get healthy by moving and doing or grooving. It’s a fantastic message: exercise can be as playful and individual as you make it.
These days I mix up my daily power walks and yoga with exercises I learned from a trainer I hired a few years back. I also dance–whenever and to a variety of music. The less time I spend worrying about when I will exercise and just move, the better. All that good oxygen that gets into your brain from movement will help you be move creative in your caregiving. Keep in mind these three tips:
- Take the stairs instead of the elevator
- Get outside. Fresh air and a brisk walk does wonders
- Arm circles—10 forwards and 10 backwards will get your blood flowing
If you can focus on sneaking more movement in during your day instead of pressuring yourself to get “enough” exercise, I know you will be a happier caregiver.
If you 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 memories 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.
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”?
I 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.