There are many things I wish I could go back and do a different way, where providing care for my mother is concerned.
I can’t do over anything, but if I could, I would:
Move in sooner so I had more time with my mother.
Be sure I knew where all her documents were before moving in and avoid the needle-in-the-haystack searches.
Write a sort of contract with my whole family’s input so everyone knew our roles clearly. Know beforehand, who already had roles to play and what they were.
Include in that contract what I was able and willing to contribute and what I expected in return.
Set up a backup to the verbal respite plan. As good as it sounds when someone says, “Just call me if you need help,” and “I’m here for you,” I’d remember that words carry little weight at 4 in the morning or when busy schedules interfere with my need for time off.
Set up a backup to the backup so my breaks and respite care are ensured. Have an emergency backup in place before I need it.
Before moving in, take extra time to discover the family’s understanding of the situation. I’d include them more and make sure they included me, too.
Insist that all my siblings and their children take time to do a Four Generation photo sooner, rather than wishing we had.
Sing more (even if it is off key).
Go more with the flow and less against the stream.
Prepare for the finality of the situation. In other words, I would have a plan in place for when my job as HANC ends, rather than wondering what I should do.
I may have other areas I’d like to do over, but first, I’d like to hear from you. What would you like to do over in your life? Not just as a caregiver, but in your life in general or in your “other career,” what would you like to do differently, if given the chance?
Write me at email@example.com
and let’s start a dialogue about change!
My husband asked a simple question. “Are you still writing?”
“Of course I am. Why would you ask?”
“Because, I care.”
He knows how important my writing is to me and we haven’t discussed my work lately.
It seems the only things we discussed for so long related to my mother.
My husband and I talked about my mother’s health, her eating habits, her attitudes. We chatted about family matters involving who had and had not visited, who interacted with Momma on Facebook and where she and I went on our frequent drives. He teased that I should have worn a hat similar to the one Morgan Freeman wore in the movie, Driving Miss Daisy.
He worries that I may have lost sight of my writing goals. Like many things, caregivers need to reassess their dreams and goals, because we ought not let life interrupt or interfere with our plans. My writing hinged, somewhat, on my mother’s situation, but my husband is correct. I didn’t focus myself around my writing – not enough, at least.
I still write short articles for the publication that was once my daily job. I write for my website and this blog, though I don’t keep myself to as strict a schedule for updates as I’d like. My freelance editing gigs keep me busy in spurts, but not so busy that I can’t block out personal writing time most days. Managing my mother’s Facebook page did consume a small amount of time, but it brought her too much pleasure for me to ignore.
I know I need to refocus myself and reestablish my writing to-do list. It’s what I love most in life, after my family and friends. Having my words published in my lifetime is vital to me. However, your goals and dreams may be different.
Every HANC has had goals, dreams, personal ambitions and hopes put on hold. Some have allowed their visions to fade away. Perhaps the most unfair part of providing care for our loved ones is when we allow ourselves to become the white noise of our own lives.
We know we’re there, but we don’t really listen to our inner voices any more. Even after the care giving stops, there is a certain re-adjustment period that is necessary for us to function, again. Our lives have been interrupted and now, we have to find a way to plunge back into them.
I challenge you to join me in reclaiming your dreams.
What goals have you been ignoring?
What do you want to do with your life, once it is wholly yours again?
What can you do today to work toward your dreams?
Who can help with your quest?
Start by making a list of all the things you hope to do, one day. Then research what steps you need to take toward fulfilling those goals. You can never achieve a dream or accomplish a goal if you don’t take that first step.
Be serious or be frivolous, but be honest.
Leave me your comments and let me know how your dream progresses.
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 shifts, each no more than eight hours each. 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, despite their best intentions. 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.