Archive for the ‘HANC’ Category

Caregivers, Check your Goals

  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.

Journal words

  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.

Horses behind fence

            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.

Heron at Lake

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.

Honest Abe

            Leave me your comments and let me know how your dream progresses.

marybrotherton@gmail.com

Make Self Care a Priority

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.

ClockNo 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.

running out of timeIt’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 blurs when you're having funTime 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.

Five o 5Remember: 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.

Time

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.

A Corner Office for a HANC

I’ve been promoted!

The new position didn’t come with a pay increase, but it did come with a corner office.

Office in the corner

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.

Small bird

            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.

bridge over untroubled water

            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.

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.

Appointment checks

I realized I needed to adjust my point of view.

Sidewalk 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.

Road in Santee

            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.

Holding a camera

No boundaries and no timers or schedules are good for my art, but bad for the rest of my life.

Calendar

            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.

Female executive

            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.

Relationships

            Although it might be nice to have the hefty salary expected with a large, naturally lighted office, who needs that kind of stress?

Office building

Put it in Perspective

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.

Time

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.

Cookie goddess

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. One or two in every bunch

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.

Skydive to the destination

Once we moved in, I had to accept that I could not move the furniture – ever – because that kind of change disrupts her reality.

furniture

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!”

pointing boy

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.

loose point

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.

Mother of many

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.

Clover

My mother and I are making memories that I will cherish the rest of my life!Enjoy life

Some Days Need a Tea Party

Today, my mother and I had a tea party. Just the two of us.women in hats

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.

Mobile tea party

Still, today, I knew that only a Tea Party would lighten the somber mood that had taken over since the recent winter storm that did little but provide an interesting photo op for me.ice on leaves

Momma and I wore hats and toasted each other with wine glasses filled with orange juice – and we ate leftovers.

Toasting with Juice

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.

tv remote

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.

Party food

We giggled together and remembered when Bernie brought Gabby out for a tea party.

Child behind flutes of lemonade

Momma filled up on a variety of tasty tidbits and for a moment, she wasn’t bored or blue. I live for those moments.

Stop, Drop & Roll!

fire

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!

Three way stop

Stop what you are doing and find a new, spontaneous outlet for yourself.

Lake Sunset

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

Roll out! Go somewhere offsite quickly and change your focus so you can return fully charged and ready to resume your duties.

Angel at rest

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.

clocks and more clocks

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.

bee hovers

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?

 time runs out

If all the old things you did for yourself are no longer working, remember to stop, drop and roll. Before it’s too late.

 

Where is my Oxygen Mask?

sparkly shoes

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.

Dog's bathroom

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?

Military uniforms

Flight attendants on commercial airplanes tell passengers “Take your own oxygen first.” You cannot help anyone if you are in distress.

Care for you, too

 

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.

take a break

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.

Angry boy

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.

movie poster

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.

constipation

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!

pretty two shoes

I did, for a short while.

wine glass of juice

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.

sick dog

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.

fresh vegetables and fruit

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.

soda

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.

mask decor

Now, where did I put my oxygen mask?

I Cried over Brownies

Dessert

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.

brownies by mail

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.”

mini brownies

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.

yummy

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.

dessert

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.

doughnut

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.”

oreos and milk

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.

Cupcake

Maybe I cried over my brownie because I just miss my friends.

My Five-Year Plan – Revised

If you had asked me five years ago, where I thought I’d be or what I expected I’d be doing today, I would have said any number of things – most related to editing or writing or photography. I might have discussed home ownership plans, exotic travels and dinners with friends.

Evening out

5: Where Will You Be Five Years from Today?

I certainly would not have said I might be a caregiver and I definitely would not have expected I’d have traded my carefree, suburban lifestyle for a particular life in my small, rural hometown, performing nursing duties.

Not me.

Care

A year ago, I anticipated I’d continue to do the thrilling things I’d done since the beginning of the 21st century. I thought I’d still be skydiving or flying along Central Florida’s shoreline in historic airplanes or the newest air ambulances. I was certain I would interview astronauts, celebrities and notable locals as I had for years during my career as a journalist.

Freefall

Above All Else: A World Champion Skydiver’s Story of Survival and What It Taught Him About Fear, Adversity, and Success

Until recently, if you had asked me to project myself into a five-year plan or to stretch my imagination to dream my most magnificent dream, I would have told you that I’d be on my way to publishing my own magazine and my first novel. Some of my children’s books would already be on bookshelves. Perhaps, I’d be planning to attend a writer’s retreat or symposium. I expected to be well on my way to facilitating the first of my exclusive writer/photographer weekend retreats this year – or maybe next.

Writer event

On Writing: 10th Anniversary Edition: A Memoir of the Craft

Instead, I manage a calendar for my aging mother, set up appointments for her well-being and ensure she sees more than the interior of her home or doctors’ offices.

Planner

2014 Amy Knapp’s Big Grid Family wall calendar: The essential organization and communication tool for the entire family

Smoothies and juices were my dietary staples – when we didn’t order  takeout. Now, I plan and prepare three meals every day, eaten around the same table I shared with my siblings, four decades ago, as children with our parents. I monitor my mother’s fluid and medicine intake, hold her hand when she’s sick or frightened, tuck her into bed and urge her outdoors when the weather is good or open the drapes so she can see the songbirds or the setting sun if it’s too chilly. I remind her to call her friends and help her read the menu on her television so she can diversify what she watches each day. She and I have settled into a rhythmic routine; my husband enhances the song.

two generations

Twelve months ago, my plans did not include emptying chamber pots or scrubbing copper saucepans. They involved acting resumes, headshots and auditions or sharing techniques with skilled photographers, regular meetings with talented writers and editorial reviews. A year ago, my only medical concerns involved occasional visits to my Traditional Chinese Medicine doctor for herbal remedies.

Traditional Chinese Medicine

Alternate plans

Today, I wait with my mother in an over-booked physician’s office and hope the flimsy mask she wears is enough to thwart wayward germs since the doctor has no special accommodations for geriatric patients who require routine blood work, but aren’t sick.

Office Care Geriatrics

doctors patients.

My goal is to remain calm, patient and level when she attempts conversation over a too-loud television or asks the same question for the third or fifth or seventeenth time. The plans for my life have changed dramatically and there is no way to know what lies ahead. If my mother’s health permits, I plan to find a way for her to enjoy the garden we are planning together as it goes into full bloom next summer.

seeds

Survival Seed Vault – Heirloom Emergency Survival Seeds – Plant a Full Acre Crisis Victory Garden – 20 Easy-to-grow Varieties

Even the best plans aren’t permanent. I know my new lifestyle is temporary and I intend to enjoy this experience with my mother. I know I will cherish all my memories forever.

Girlfriends

 

Sandwiched!: Tales, Tips, and Tools to Balance Life in the Sandwich Generation

Two Answers

Someone said to my mother, “You provide room and board and internet service. I know your grocery bill has gone up since they moved in — and your light bill. Do they even help with expenses? Well, what do they bring to the table?”

What do you bring to the table

 

Trade places with me. Let me hang out at your home for seventy-two hours while you wake at four in the morning to the smell of sickness and soiled bedclothes. I’ll walk your dog and empty your cat’s smelly litter box while you hold bedpan vigil.

dog walker

You can wake every morning, at dawn, to the sound of her potty-chair lid slapping closed moments before she shuffles down the hall with her walker. The cat vocally greets her, which is an additional reminder that it’s time for slumber’s end. That is, unless she calls out from her bed, due to illness that can be rather unpleasant to deal with or discuss.

Walker and cat

Why don’t you nag my mother about water consumption and beg her to use the toilet rather than her potty chair during the day? Oh, and please remind her to wash her hands, too. I’ll eat out while you cook a balanced meal and listen to the complaints when you put a toddler-sized portion on her plate, only to watch her pick at it or hide it in her napkin.

salads

My mother was more gracious. She simply asked, “How would you like to do what they are doing for me?”

Sunset colors

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