To all-housekeeping staff, food service workers, aides, nurses, office workers, and everyone else who provides care to others:
Category Archives: Caring for the 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”
Probably the hardest part of my days as a young girl was coming home from school. I didn’t know whether or not my mom would be awake with a drink in hand, or in her room. When she was in her room, the tell-tale sign that she was probably passed out was the empty insulated glass in the living room that smelled of pine trees.
Not knowing what I’d find kept me in a heightened state of fear. I ran scenarios of what I would do depending on who I found–awake mom or passed-out mom. I dreaded coming home, so instead, I kept ridiculously busy with extra curricular school activities. But that, too, was exhausting.
When I’m exhausted my emotional brain gets triggered. I receive panic messages: “You’re not safe! No one likes you! You can’t fix this or anything!” It’s very difficult to accomplish anything logical when the animal brain kicks into high gear. I don’t find myself wanting to run, so much as wanting to crawl into bed and “sleep it off,” hoping all the discomfort simply goes away.
I’ve grown to understand all those deep-seated emotions can easily be triggered by lack of sleep, an overload of external stresses, or a casual comment that hits me the wrong way. I’m also learning that when I’m triggered, I need to stop, acknowledge the feelings, understand where they come from, and take a deep breath. Sometimes I need to dance or go outside and work. Sometimes I need to cry and call a friend for support.
Caregivers can often get triggered, especially when they’re already beating themselves up for not doing enough or being enough for either the person they’re caring for or their families. You’re already tired and stressed because of the job of giving care. It’s as if your animal brain is just waiting to pounce on any trigger and throw you into panic mode.
Understand that fear is exhausting, that you’re already in a tender place. Write a note to yourself that says, “This is my animal brain on high alert. It’s not reality.” And then reach out to your trusted friend for extra support.
I get it; When caregiving is unpredictable, it’s extra challenging to respond in a calm manner, especially if you hold deep-seated past fears. Now is the time to change your old, outdated messages. Let go of the irrational fear messages and replace them with a new mantra, such as “All is well.” That message will seem fake and uncomfortable at first, but will serve you better in the long run. It’s also much less exhausting than living in fear.
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.
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.
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.
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.
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.
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:
- 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.
- 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!)
- 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.
“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.
A simple way to beat the “Not Enoughs” is:
- 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!)
- In that logical state, write down all that you do for your loved one. (Make no judgments as you write.)
- Stay in that unemotional place and look at your list.
- Ask yourself, “Could I do more? What would I do? How would it affect my life?”
- 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.
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.
88-year-old Betty finished the 3 1/2 hour rainy-day hike. It wasn’t something she did alone; the group walked along side her. With a walking stick in one hand, her grandson held the other. When the creek was too wide and rocky, our guide lifted Betty safely to the other side.
Even though some in our hiking group may have wanted to climb a peak or move more quickly, our personal desires easily gave way to the group’s goal of completing the hike as a whole. As individuals we may be preoccupied with our individual agendas, but allowing others to interrupt our preoccupations can be a sweet gift. We tune into someone else and we wake up to the present moment.
This is what it can be like to be a family caregiver. If we’re able to set aside our personal wants and tune into another person, it is a great gift to both care receiver and ourselves. When I completed Robert V. Taylor’s 21-Day Reboot, I found myself tuning both inward and also outward per his daily suggestions. When you listen to our radio interview, you will see just how helpful his 21-Day Reboot can be for family caregivers. Instead of being weighed down by daily tasks, embrace Robert’s Day 5 suggestion: “Delight affects how you participate in your own life and the world. Chose to allow yourself to be delighted by something or someone today. Tell another person about your delight.” Read more »
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.
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.
I think in song lyrics. I open my laptop and the words to a Bahamian lullaby pop out of my mouth: “All my files Lord, so-oon be open.” This just happens with me. And yet if you sit beside me in church when I have the words of a hymn in front of me, I’ll sing different words. My good friend Emily chuckles and says, “How can you get the notes so right and the words so wrong?”
Music has always been a part of my life. It’s something I can share during a presentation or at the bedside of a Hospice patient. When I worked in a dementia care community, I used song to greet the residents. Music can be used to shift moods, to acknowledge sadness, to release anger, to embrace happiness. As a family caregiver, you can use music to connect with your parents. Instead of listening to “their” music or “your music,” take turns. My dad and I dance to Madonna and Frankie Valli. Instead of telling your kids or grandkids to “turn off that noise,” engage with them. What is it about the beat, the words, the band that they enjoy?
More than just enjoyment, music can also be used to help someone who has suffered a stroke to relearn how to speak, a person with Parkinson’s disease to improve their posture and reduce pain, or a patient in Hospice to leave a song legacy. I welcomed back Melissa Hirokawa, M.M. MT-BC, Neurologic Music Therapy Fellow, on “The Unexpected Caregiver Radio Show,” where we focused on using music in stroke therapy. Melissa clearly loves her job and shares delightful stories of how her work has improved the lives of those elders to whom she gives care. Our previous interview focused on how music therapy supports the family caregiver. Both interviews are upbeat and insightful.
Whether you engage a music therapist, use songs to connect with your loved one, or like me, think in songs, let music support your on your caregiving journey.
How do you reconnect with Mom and Dad? Even if one of them has a disease that causes dementia? It is often a challenge, especially when we’re trying to do something “special.” Family issues get in the way and we get frustrated. Your parents may not move as quickly as you do and you get irritated. When they don’t hear you (and you don’t understand them), tensions rise.
But I’m talking about reconnecting with them and not doing anything special. I recently interviewed Dr. Victoria Sweet, author of God’s Hotel. Dr. Sweet worked for over 20 years at San Francisco’s old Laguna Honda Hospital, a giant chronic care facility for the city’s destitute and ill. At one point in the interview, she said, “There’s nothing like presence and giving someone space.” Another reminder of the importance of being with someone vs. doing for someone. Dr. Sweet used to sit on the bedsides of her patients and listen. Or at times, just sit. It is that simple. But you must let go of the to-do list or the notion of doing something special.
Showing up is half the battle, but when you do, allowing someone space to express themselves—to cry or to laugh—is priceless.
Of course there are other ways to actively reconnect with your parents (and that is exactly what I talk about in The Unexpected Caregiver). Bring in a picture, a children’s story, a memento, and hook into your parent’s memories: “Tell me about this handkerchief, Mom” or “What is special about this book, Dad?” Be gentle if there is memory loss. Reconnecting is not about the correct answer, but is more about sharing stories.
And don’t forget to hook into your parents by just sitting beside them, connecting through silence. Silence is, after all, golden.
I have put together a playlist of several short videos that focus on taking care of yourself during the holidays. I welcome your feedback on the videos and on your own holiday family issues as you cope with caregiving.
“Nothing others do is because of you,” says Don Miguel Ruiz in his book, The Four Agreements.
So when your mom says that she’s lonely because you don’t visit more often or your dad complains about living in assisted living because you couldn’t make room for him in your home, don’t take it personally. Easier said than done. Read more »
Aging in place is something many of us want for our parents and ourselves. We want to stay in own homes – wherever those homes may be. Monitor systems, emergency buttons and sensors can be part of making this a viable option. But are we as adult children or family caregivers ready to act on the information that we get from the various technologies?
I don’t know about you, but my father still gets slightly squeamish when he hears the word, “monitoring.” And yet according to my last radio show guest, Bryan Fuhr of Healthsense (www.healthsense.org), the majority of older adults he runs into welcome technology that will allow them to stay put. Read more »
This is what I will do and this is what I will not do. Seems simple enough. But when caring for a family member with whom you’ve shared a complicated relationship, staying within your boundaries is challenging.
I suffer from wanting to “make everything better,” and that’s when I tend to creep over the edge of my boundaries. It’s hard to see a loved one struggle, but if you don’t stay within your limits, you’ll soon be swallowed up by your caregiving role. Read more »
Every fall and spring I head to Concordia Language Villages, where I am in charge of a Norwegian Language and Culture Adult Week. And every year I hear stories from participants on their caregiving journeys. Because I have many repeat participants, I have been honored to walk alongside them for just a part of their caregiving journey. Here are snippets from my conversations (with small details changed to protect privacy):
- Dad now lives alone and has begun to have wine with dinner. He may be drinking too much and I’m worried. What happens if he falls? And he wears a button around his neck, but he doesn’t remember to push it for help.
- Mom has had another small stroke. She is now incontinent. She is becoming higher care. I’m tired.
- Our friend no longer enjoys going out to coffee with his friends. He can hardly talk and is very unsteady on his feet. He mostly sits at home.
Our caregiving stories are important to share; others learn from them. I interviewed KYMN’s Tim Freeland, as Tim is on his grandmother’s caregiving team. Tim’s family is cutting nursing expenses and increasing contact in creative ways. Take a listen, then share your story.
We are our own worst critics. The niggling voices in our heads suggesting we haven’t done enough or accomplished tasks correctly are simply…pests. Tell them to go away. (Which is easier said than done.)
Caregiving provides us ample fodder to be extraordinarily hard on ourselves. It’s a tough job. The job is about giving, but not to the point of emptying your own bucket of resources. As caregivers, we must also take care of ourselves. (Again, easier said than done.) But when we neglect self-care, we become overly critical of the care we give to others and that’s when we judge.
Just for a week, try putting yourself on the gentle cycle. There is not one right way of being a caregiver. Be yourself and be smart. Contact me if you need support.