HANCs – those people who call themselves housekeepers, activity directors, nutritionists and companions – may actually fantasize about the hour their roles as care givers will end.
No matter how difficult the path you are on, once your need to provide care comes to an end, know that your life will forever be changed. Many who ensure a better quality of life for others suffer long-term health problems, especially if they did not have a sufficient support team in place to help provide proper respite and long enough breaks for the care giver.
It’s not that care givers want to do everything themselves or that we are claiming our territories or that we feel no one else is capable of providing the level of care our loved ones have come to expect. We do not wish to impose on our friends and family members, despite their reminders to, “Call me if I can help.” Sometimes, arranging a break seems to cause more work than relief and when your phone rings with question after question, while you are trying to relax, it’s often easier to just cut your losses and return to handle whatever crisis caused the confusion.Time and death wait for no one. While you are planning to take a break, some day in the future, your loved one could pass away or your own health might be compromised. Don’t wait to plan your breaks tomorrow. Find the help you need, today! Stop relying on those who promise to do better and have great intentions.
Remember: most people work five days a week for eight to ten hours, then take two days to recuperate, run personal errands, relax and rest. They often get a full week’s vacation (or more) from their jobs and some receive pay for that week off. Professional care givers, whether in nursing home, assisted living facilities, or in home providers typically work in three eight-hour shifts. They do not work 24 hours, seven days a week, 365 days a year – with only occasional, sporadic breaks and often no compensation. They do not sacrifice their personal lives in the same ways.
Take time for yourself. Take a break. Take more than one. If you do not take the necessary time to care for yourself, no one else will step in to volunteer. Don’t wait until it’s too late or you find yourself unable to provide care because you are in the midst of a personal crisis. Care enough for yourself to make this a priority. It is that important.
I’ve been promoted!
The new position didn’t come with a pay increase, but it did come with a corner office.
Each morning, if I get to work early enough, I can sit at my desk and watch the sunrise. Since it’s on the ground floor, I’m able to observe birds in nearby trees, which can be a momentary respite for my eyes.
My new office also comes with surround sound, a fully stocked refrigerator and a snack drawer with all my favorite munchie-crunchies. Finally, I have a personal assistant who reminds me when it is time to eat or take stretch breaks. Perhaps one of the best perks of the job is how much freedom I have to be with family and the out-of-office scenic tours I’m expected to conduct.
The truth is, nothing has changed but my perspective. I’ve been using my mother’s fifty-year-old kitchen table as a desk since I moved in with her. It’s still a kitchen table.
When I’m not at my computer or cooking or cleaning, I am with Momma, who may not appreciate being called my personal assistant.
I realized I needed to adjust my point of view.
Rather than seeing her as a frail, elder demanding attention through pleas for constant snacks or drives to nowhere, I now see her as my private helper and partner in our grand adventure.
Whether I am blogging, editing, posting photos, writing or just goofing around with social media, it’s easy to lose track of time on the computer if someone does not distract me. When I go for walks, especially if I take my camera, I become lost in my own world. I tune everything else out.
No boundaries and no timers or schedules are good for my art, but bad for the rest of my life.
My new outlook keeps me attuned to the truly important things – my relationships and my Self. My physical, emotional and spiritual self, with a capital S, deserves my focus. Rather than seeing my life through the dutiful eyes of a daughter who has given up much to provide support for a loved one, I now see myself as an executive HANC, with a side job that occasionally takes me away from fun excursions with Momma.
As her health and stamina slowly return to her, we’ve all noticed her personality is also making a comeback. Her wit and humor, long subdued by malnourishment, pain and dulled by medications, entertain anyone willing to spend enough time interacting with her.
Although it might be nice to have the hefty salary expected with a large, naturally lighted office, who needs that kind of stress?
My lifestyle isn’t the only thing I’ve adjusted since making the decision to become my mother’s caregiver. I’ve had to alter my attitude, which has not been easy. Almost as difficult, I’ve adjusted my sleep-habits to accommodate hers and fine-tuned my diet to make her mealtimes easier, because I discovered the difficulty in trying to get her to change – anything.
My perception of reality is in a constant state of change.
I remember when I believed my mother was Amazonian in strength and fiercely independent. She was always honest – brutally so – but she was usually agreeable and understanding.
She is still strong-willed and sometimes she can be contrary, despite her desire to be compliant. Like mother-like daughter!
In her heyday, this woman could hear a muffled childish giggle and immediately know which of her many children was up to mischief. Today, her hearing is so compromised that she habitually stares at the television without understanding. This leads to boredom I can’t always counteract.
Normal conversations are frequently lost to her and she sometimes mutters, “I still don’t understand, but I guess I don’t need to.” Yet, if we raise our voices so she can hear, she thinks we are cross with her.
She sometimes acts like a child, but we both know she is an adult. Her aging must be harder for her than it is for us, though it seems we are the ones making all the adjustments. I remember telling my husband that we should try to keep things as normal as possible for her. Her normal life means ours must sometimes take an unnatural detour.
Once we moved in, I had to accept that I could not move the furniture – ever – because that kind of change disrupts her reality.
Once, she scolded my husband and wagged her index finger at him, saying, “Listen here! I am going to have my way, because this is my house. You hear me? It’s my house!”
My brother later asked my husband, “Which finger hurts more, this one or this one?” while brandishing his middle finger opposed to his pointing finger.
We all laughed over that and we now refer to it as the finger incident.
Many days, my husband and I must remind each other of our reason for being here. It’s not for family estate or an immense reward. Nor is it for recognition or honors. It is for the love of the woman we call Momma.
There are days I wish I’d hesitated or made a different choice when my husband asked, “Why don’t we move in with your mom and help her?”
Then, I put things in perspective and adjust my idea of reality and truth. I know I am where I need to be right now and I’ll greet each day to see what comes next.
It boils down to love. It’s not that I love my mother more than my siblings do, but love drove my husband and me to choose this life – at this time. I’m not the family saint or any kind of angel. Despite the adjustments and sacrifices, I am the lucky one.
It doesn’t happen often enough, but when my mother and I can laugh together, I’m reassured that my husband and I made the right decision to live with her during her twilight years. It brings me joy to see her throw her head back and laugh no matter the reason. Typically, jokes might evoke a chuckle or a smile, but her belly laughs are what make me happiest.
Sometimes, we laugh at my cat’s antics. For a twelve-year-old indoor cat, he is active. At no more than eleven pounds, he can shake the house when he runs. It’s amusing to hear the crystal glasses tinkle when he charges after a phantom.
When she was raising eight children, my mother didn’t believe animals should share our home. We were her priority, not tending to cats or dogs or any other kind of critters. We didn’t realize, until we were adults, how hard she had to work to provide food and shelter.
My father was a highly functional alcoholic and my memories of him include cigarettes, coffee, occasional beers and laughter. I remember his deep chuckles, his mischievous titters and his all-out, this is the funniest-thing-ever laughter. He worked long hours at his motel job and I was too naïve to recognize the secreted bottles for what they were. I knew he was the maintenance man at our church and he did all he could to keep up repairs at home. He died when I was twenty-six. My sons were very small, but they, too, have fond memories of their grandfather.
To ease the stress from what must have felt like never-ending potty training, teenaged angst and a husband whose drinking habits hindered his ability to provide for his family, my mother often stepped outside and screamed. She didn’t need anxiety pills or therapy, she just screamed. It grounded her. Then, she resumed whatever task she had been doing, as if nothing had disrupted her routine.
I’ve tried to emulate her stress-relieving tactics with limited success. I’m not as strong as she was or is. Daily, I struggle to remain calm and solid. Every day, my son and I walk several miles and I make certain that taking care of myself is my top priority. Knowing I can never be a proper caregiver if I am not fit, good nutrition is as vital as daily exercise. Deep breathing, meditation and talking to other caregivers help me stay focused.
Still, laughter is my best stress-relief. Most of our shared joy comes at our own expense.
Together, we laugh at our mistakes. We are both grammarians, so if one or the other mis-speaks, and the other catches it, we have an opportunity to laugh. We each have extensive vocabularies and we know how to use words properly, but from time to time an ain’t slips out or I’ll ask – never she – where something is at. Her answer is always, “it’s behind the at.”
We must find a way to deal not only with the stresses of care giving, but life itself. I recommend laughter. Laugh alone, if you must, but a laugh partner keep the laughter rolling from trickling giggles to guffaws that hurt your sides.
I hope your sides hurt more than your heart. Please, leave me a comment and share how you handle your stress.
What’s your favorite way to laugh?
Who is your laugh partner?
Who tickles your funny bone?
What memory makes you smile every time you think about it?
I may not know all the reasons my father drank, but I may have one explanation.
My mother can be a nag. With her worsening memory, her gentle reminders sometimes bring to mind a Komodo Dragon eating a Water Buffalo.
Gnaw, gnaw, gnaw.
She especially likes to recall how much Daddy drank. This leads into the financial impact of his functional alcoholism on the family.
He always denied being an alcoholic.
“Alcoholics go to meetings. I don’t.”
I don’t remember seeing my father drunk. He had beer with the other men at picnics and I knew about his whiskey bottles under the driver’s seat. I just didn’t see how is drinking affected the family.
Occasionally, Momma will say, “I think he was in a lot of pain. Maybe that’s why he drank so much.”
Daddy was in his late thirties when he suffered his first serious heart attack and he endured multiple cardiac arrests before his final, fatal one in his early sixties. He didn’t drink much after doctors discovered his brain tumor. His heart simply stopped almost two years later.
I think Momma may be dealing with remorse for her behavior toward Daddy’s drinking.
She sounds sad when she says, “I will never forget the day I walked into his hospital room and the nurses had given him a six-pack of beer. He’d gone into DTs because he hadn’t had drink in a long time.”
Momma usually stops talking about his drinking for a while, after this memory.
I’ve never seen anyone with Delirium Tremors from alcohol withdrawal, but I can only imagine its horror based on the pain I once endured when I tried to quit caffeine overnight.
My youngest brother, David was the only one of eight children living at home who had to put his life on hold for Daddy. During his senior year of high school, he helped drive Daddy to doctors’ appointments and chemotherapy treatments. At seventeen, he was far too young to be a caregiver, but he cared for our father, and consequently, our mother. Still, as soon as he could, he joined the Navy and moved away.
I can’t move away. I’m committed to providing for my mother until she moves beyond this life. I can’t drink too much or too often, at least, but on days Momma gets stuck on an unpleasant memory, I can certainly understand why Daddy did.
She never learned to type and isn’t comfortable for long periods at a desk, but we are making this one of our shared activities. I sit in a chair next to her recliner and together, we look at the photos shared by her children, grandchildren and great-grandchildren.
Nieces and nephews and their children are also getting involved. If Momma makes a comment verbally, I pull the laptop back and type it in for her.
She’s reluctant to have me take her photo and is seldom pleased with the results, although she is still as beautiful at 87 as she was at 17, when her portrait in a photographer’s display stole my father’s heart. She has aged well, but she won’t believe me when I tell her.
She has agreed to photos that partially hide her face, so we are making a game of taking her photo behind bouquets and books. She may agree to photos where she is the background, rather than the main subject, but we’ll have to experiment with that for a while.
Most of my aunts and uncles are deceased, but their children and grandchildren are also enjoying the interaction. I’m finding it’s a good memory exercise for all of us. It’s my family’s version of Who’s Who, because we’ve lost touch with many of our cousins.
In just a week, she accepted 75 friend requests, every one related by blood or marriage, with only a few family friends in the mix.
My sister, Bernie is the ultimate tea party hostess. Once she and her granddaughter brought an elaborate portable tea party to us, I knew I could never compete with that.
Momma and I wore hats and toasted each other with wine glasses filled with orange juice – and we ate leftovers.
We didn’t have a bouquet of fresh Spring flowers or pink lemonade in champagne flutes. We did have fun, though.
Most days, Momma wants to eat half a grilled cheese sandwich or maybe some soup, sometimes, an omelet. She eats quietly and quickly and soon is back in her recliner, searching for words in one of her books – when she’s not channel-surfing and grousing about other people not calling her.
Today, I decided we needed a tea party, complete with toast points and the mush that is leftover from porcupines, a meatball made with rice and hamburger. I knew I could get Momma to eat a few apple slices, but only if they were presented properly, and she tried a Romaine leaf with some cheese and sausage.
We giggled together and remembered when Bernie brought Gabby out for a tea party.
Momma filled up on a variety of tasty tidbits and for a moment, she wasn’t bored or blue. I live for those moments.
As a caregiver, you must know your limits. If you don’t, you may find you reach them quicker than expected. Before you burnout, remember what you learned about fire, when you were a child.
STOP, DROP & ROLL!
Stop what you are doing and find a new, spontaneous outlet for yourself.
Drop whatever tool is in your hand, whether it’s pruning shears, a broom or a wooden spoon and pick up your phone to call for backup.
Roll out! Go somewhere offsite quickly and change your focus so you can return fully charged and ready to resume your duties.
Stop thinking you are the only person who can do what you are doing. You are not alone and martyrdom does nothing to help anyone.
Drop that magic wand and put up your cape. Admit you need help. Use your support system, whatever it is. Skip the guilt. Take a break. If once a month isn’t working for you, take more time off.
Roll up your creative sleeves and stop worrying about how much it will cost or how little time you can afford to take away from your duties. If you break down, how much good will you be then? If you are irritable and moody, who will want to be near you?
If all the old things you did for yourself are no longer working, remember to stop, drop and roll. Before it’s too late.
Many years ago, while visiting my sister who lives in Mississippi, I learned my siblings had called me Goody-two-shoes when we were youngsters. Even I’ll admit I don’t care to get my hands dirty – literally or figuratively. No wonder they were all surprised I took on the role as my mother’s housekeeper, managing activities for her, guarding her nutritional needs and serving as her live-in companion. It’s not a job for the squeamish or a compulsive cleaner, though some days, the compulsion to sanitize everything in the house seems logical.
Not long after my husband and I moved in with my mother, another sister told me, “We all know you’re in charge there. You’ve been pissing on all the trees.”
Her comment hit me hard in the command center of my ego. If I’m in charge, why do I feel helpless? Why do I feel “damned if I do and damned if I don’t” about so many things?
Flight attendants on commercial airplanes tell passengers “Take your own oxygen first.” You cannot help anyone if you are in distress.
Take Your Oxygen First – Protecting Your Health and Happiness While Caring for a Loved One with Memory Loss is a book that addresses the need for caregivers to make taking care of themselves a priority. Written by geriatrician Rosemary Laird, celebrity Leeza Gibbons and licensed clinical social worker and psychiatrist James Huysman, the book combines advice for caregivers with information and a candid snapshot of the Gibbons’ family’s experience with Alzheimer’s disease.
As so many support groups, Take Your Oxygen First stresses the need for frequent, planned breaks from caregiving, but It’s hard to take a break when one of the reasons I became her HANC was because everyone else in the family has hands-on jobs they cannot perform remotely. I know a caregiver must take care of the caregiver or everyone suffers. Still, I feel guilty when I plan time away from my mother, thinking her needs must take priority over mine.
When my mother says, “I know you don’t need my help, but I need your company,” I know the decision to move – when we did – was right.
Some have told me how wonderful and selfless I am for being a HANC. I don’t feel wonderful. I feel tired, frustrated and angry. Selfish for wanting time to myself – my own oxygen, I chastise myself for becoming angry.
There is no magic pill for memory loss, no way to undo her physical disability. She is as she is. What frustrates me is a condition that has plagued her since birth. She’s always – always – always had a problem most people don’t discuss, except with their doctors.
Well, dammit! I am in charge here and this is my territory. I have a point to make, in my goody-two-shoes superior way, so I’m going to fix her all by myself! How hard can that be? Constipation has been her nature for 86 years. Surely, I can change her nature. By golly, if I can’t!
I did, for a short while.
We had a custom where we talked in the kitchen while I made wholesome, fresh juice from all the vegetables and fruits and berries we both enjoyed – and a few we weren’t fond of – mixed with the tastier ones. I served it in martini glasses and wine glasses and teacups and coffee mugs and jelly jars. Together, we drank to our healthy digestive systems.
After a couple of months, she became very ill. Her body missed the chemical compounds it had become dependant upon, despite of the cleansing effect of the juice. Within a few weeks of her illness, we resumed our regular routines, but a month later, she was sick again. The next time her malady struck, she became dehydrated and needed hospitalization.
That’s when I learned.
Despite my attempts at tasty, nutritious meals and that healthy morning drink, her body needs additional help. Too much raw fiber causes gas; not enough causes blockage. Too much pulpy juice actually slows down her digestive system. A better option for her is cooked, fibrous vegetables, fruits and some fresh berries – when she agrees to eat them. Hydration becomes so much more important as we age, especially when we can’t remember how much or when we last drank.
I worry about keeping her hydrated when the last thing she wants is to drink. Recently, after encouraging her to drink ginger ale – anything – and after tending to her needs during a quarterly bout of digestive distress, my husband reminded me that I had not eaten all day.
Now, where did I put my oxygen mask?
I cried over brownies. More accurately, I cried while eating a brownie and ice cream. I’m not certain why. Possibly my inability or unwillingness to immediately process negative emotions were factors. Most likely, a year of caregiving without adequate support or preparation played a part.
Some of my supporters do a superb job stepping in when I need a break and some give great verbal support from far away, but others provide more excuses than help. I wish I’d taken time to research and reach out before now, but I’ve been so busy taking care of business that I neglected my backup plan for brownie tears.
Maybe, because I’m weary. I’m tired of other people telling me what I should do differently with or for my mother, telling me how they would do a much better job, how I ought to be more careful with how I speak to health professionals to ensure I don’t intimidate them. I’m exhausted with listening to people who preach to me about their erroneous perceptions of facts related to their versions of truth.
Perhaps I’m simply frustrated. Things have not gone as planned. Assured job security has proved far more tenuous than promised. Rumors and family gossip pursue me. Few understand the magnitude of the sacrifices I have made in order to assure my mother, their mother, our mother, their grandmother’s end of life has a higher quality than the one she had endured during my last “vacation.”
If I had known she needed help, she could have moved in with me. Why didn’t you let her move in with you? Nobody told me she was that sick. Some tell me I was going to … I had planned to.
My teeth clamp down over my tongue to keep me from responding with: If you had visited her once or twice a year or called her even once a month, you might have noticed the deterioration.
Before our move, my daily phone calls did not transfer the odor of illness and frailty. The telephone has not yet been invented that conveys loneliness and fear.
Pseudo-home ownership replaced years of renting from property owners who handled home maintenance issues for us. This goes deeper than caregiving and camaraderie. This is a convolution of mother/child issues and a marriage mixed with sibling rivalry and nosy-neighbor syndrome added to years of how-it-was-done-before and why-change-it now.
What if I cried over my brownie because I am ill-equipped and unqualified to be a caregiver? Does my reluctance make me unworthy to be one? From the moment I knew I would move in with my mother, I embraced the HANC acronym. I preferred to think that if I engaged in the tasks of providing housekeeping services, some fun activities to do with my mother, cooking nutritious meals for her and being a companion to ease her loneliness, my mother’s needs would lessen. Talk about naïve!
My mother’s needs for help with her daily living tasks change frequently. She can be feisty and sassy, but she can be weak and humble, as well.
She often tells me, “I’ll never be sixteen again,” to which I reply, “Good, because I wasn’t born when you were sixteen and I don’t want to be born again.”
One thing that has never wavered after our move is her sincere gratitude for our presence. Throughout the day, but especially in the evenings, when I tuck her into bed, she tells me how happy she is to have us living with her.
“I’d be in a nursing home – or dead – if you weren’t here.”
I know I am doing a necessary service, one no one else would do. I know I am where I need to be at this precise point in time. Also, I know that, despite any difficulties, there will come a day that I will wish I had just one more day with her, one more hour to attend her needs, one more opportunity to tell her how much I love her. This won’t last forever. Today’s stressors and gossipers will be tomorrow’s history . Still, the job is not easy. It’s not difficult to do, just not easy to reconcile.
Maybe I cried over my brownie because I just miss my friends.