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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
In the movie, The Bucket List, two men from opposite edges of the financial spectrum and conflicting life philosophies end up in the same room with the same powerful prognosis, you will die, sooner than you think you should. Jack Nicholson and Morgan Freeman portrayed cancer ward escapees who roamed the world fulfilling their life goals, or what Nicholson’s character called his Bucket List. Together, they fulfilled their singular and united goals and dreams.
BucketList.org provides an online forum to record lists of things to do before dying, as well as a place to brag about accomplishments and search other lists for ideas.
HANCs need bucket lists, too – things to accomplish before the person in our care passes away. Don’t forget the fun things you want to do and then go out and do them, if you can. Of course, one of the reasons you are a HANC is because someone is unable to do things independently. Otherwise, you would not be there. But, you can still talk, dream and plan.
Here’s how I started the conversation one day, as we ate lunch together.
“Momma, I remember you told me you used to want to drive for NASCAR. Is there anything else you wish you could have done?”
With the same mischievous grin that stole my father’s heart, she said, “I always wish I could have been the first woman on the moon.”
We spent some time discussing what she thought she would have seen and what she hoped to find there. She told me how she used to watch the “man in the moon” change expressions and she wondered if she would have been able to walk across the moon and see what caused those changes.
She wasn’t interested in discussing other goals or making plans for the rest of her days.
“I’ve lived my life,” she said. “I don’t need to go anywhere or do anything but sit in my chair and work my puzzles and wait to die.”
Some times, that’s how she feels. She’s just waiting to die. Since she enjoys looking at my photos, on days she doesn’t feel like going outside on her scooter, I try to bring the outdoors in for her. There is still so much more I would like to do for and with her.
My husband and I recently took her on an impromptu road trip to our former home in Florida.
Five local physicians had been unable to resolve a medical issue for me. After months of conflicting treatments, frustrated from the pain and inability to manage some of the simplest tasks, I made an appointment to Skype my Traditional Chinese Medicine doctor who had helped me keep my body, mind and spirit in balance for the past decade. He said he felt this was a major concern and wanted to see me in person as soon as possible.
When everyone else in the family had conflicting schedules, my mother told me to pack a bag for her. Despite her typical reluctance to step outside of her comfort zone, she agreed to take this trip because she knew how much pain I had been enduring since moving in with her.
We filled the car with weekend luggage and all the paraphernalia necessary to make her excursion as comfortable as possible.
Emergency meds such as nitroglycerin and something for nausea or pain
A list of her medications in case she needed a doctor
Puzzle Books and pens
Pillows and sweaters and lap blankets
When we arrived at my in-laws’ home, my mother was apprehensive. She had forgotten she had met them when her health was good. Her trepidation was quickly rested by the genial hospitality of my husband’s folks and despite the serious nature of our trip, she had a great time.
In addition to my HANC chores, I have a HANC bucket list that doesn’t involve out of state trips.
Laugh with her daily.
Laugh at myself as often as necessary.
Listen to her stories.
Tell her my stories.
Take her photograph as often as I can.
Sing – even if it is off key.
Read more, just for fun.
Remember my coping strategies:
Maintain my patience.
Remain composed when provoked.
Don’t allow anyone to provoke me.
Everyone’s list will be different. Don’t wait until you are facing the end of your life to make yours. More importantly, don’t make the list and think you are finished. Start fulfilling it and enjoy every single moment of your life – especially if you are a HANC. Enjoy your life as a caregiver and remember to be flexible. When you find your support group cannot come to your aid, change your perspective and you’ll find your most precious memories!
What’s on your bucket list?
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?”
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.
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.
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.
My mother was more gracious. She simply asked, “How would you like to do what they are doing for me?”
I never dreamt I would become a caregiver and spend my life as a housekeeper, activities director, nutritionist and companion to my aging mother. Not one of my daydreams involved the minutiae of being a HANC.
Like life lessons, some dreams recur until we learn from them. Others don’t need repetition to impress us. Dreams are powerful messengers that can take years to unravel.
When I was a child, I had a dream so frightening that I woke, as many children do, screaming and shaking.
My fairy-friends rested on my fingers and granted my requests until the day I sent them away with insults. Soon after, an enormous frog sat on me; only my hands, feet and head weren’t covered. I was terrified of frogs and thought I was going to die underneath this one. I called out to my fairies who reminded me that I’d said I no longer needed them in my life. I begged and pleaded, but they were adamant. They would do nothing for me. Once I apologized and promised to be a good girl, the frog vanished and I was free.
In 2002, I learned about a television series that dealt with dream interpretation, so I contacted the producer to see if he was interested in the dream that had remained a vivid memory for more than thirty years.
The Dream Team didn’t last long as a show on the Sci-Fi channel, but the interpreter’s thoughts about my nightmare linger.
The interpreter asked about my occupation and when I said I was a writer and editor, he told me I was in the wrong field. The dream – to him – clearly indicated that I should be in a healing profession such as nursing or massage therapy, since my hands played a vital role in the dream.
The frog indicated a potential for change or the unexpected.
He suggested that the fairies represented my relationships with others and with my spiritual self. He then encouraged me to do some soul-searching to determine if I should pursue a medical career.
I did not wish to change careers.
The interpreter said he thought that since I had remembered a dream I’d had three decades earlier, this was itself, a powerful omen. He urged me to put serious thought into what the dream foretold.
I dismissed the encounter as a fanciful lark. My telephone interview didn’t air before the show cancelled and I continued as a writer/editor.
A few years later, a friend suggested I join her at a local paint-your-own-pottery studio for an afternoon of creative exploration. When I saw the fairy riding on the back of a frog, I knew it was the only piece for me. It was as if the dream, rather than recurring night after night, manifested itself to me every ten years or so.
Some days, when things aren’t going as well as I’d like, I wonder if I knew, when I was in grade school, that one day I would be a caregiver to my mother. It doesn’t matter what I knew as a child or whether my dream was prescient. All that matters today is that I am able to make a difference in the quality of her life.
Theodore “Teddy” Roosevelt, 26th president of the United States of America, conservationist and creator of the National Park System, advised, “Make preparation in advance. You never have trouble if you are prepared for it.”
EDC, Every Day Carry, refers to “small items or gadgets worn, carried, or made available in pockets, holsters, or bags on a daily basis to manage common tasks or for use in unexpected situations or emergencies. In a broader sense, it is a lifestyle, discipline, or philosophy of preparedness.”
Long before I became a HANC (Housekeeper, Activities director, Nutritionist and Companion) for my mother, I knew the value of being prepared and the adage promoting “A place for everything and everything in its place.”
I am still working on the place issue and have abandoned a few ideals along the way. I’m learning how insignificant some of my personal quirks and preferences are.
It does not matter if the cups and glasses end up on the same shelf. If the teaspoons and tablespoons end up where I wanted the forks, who cares? Towels dry just as well from the third shelf as they would if they were placed on the second.
My mother often repeats a story she heard as a child whenever she wants to commend me on my preparedness.
Betsy often went with her sister who was a midwife. One time, the midwife was delivering a baby and discovered she had left her scissors at home. Betsy, who was not a midwife, pulled a pair of scissors from her basket and said, “Betsy’s ready. Betsy’s got her scissors.”
I might seem as if I am organized and know where everything is, but some days I don’t feel as if any amount of planning or preparedness training will equip me.
I haven’t been prepared to hear some of the things my mother has said to friends on the phone.
- Oh, I never go anywhere.
I make a point to take her as often as she is willing to go to places she needs to go – stylist, doctors, church, family – and places she might find interesting such as museums, farmers’ markets or just driving to see landscape and homes.
- I can’t go see her and she won’t come to me.
Now, I feel like a warden in a prison. I’ve recited names of family and friends I’d like to visit with her and she tells me she does not want to go see them, can’t make the ride that far, won’t be able to climb the steps into the home or they should come to her.
- Don’t get me wrong. I enjoy having them here, but . . .
- I don’t do anything. Every day is the same. I just sit in my chair and do my puzzles.
I have scheduled my editing work around my mother’s day. I usually work long after she has gone to bed.
What’s a HANC to do?
Take a deep breath and realize that whatever happens between girlfriends on a phone call – even old girlfriends – is between girlfriends and shouldn’t be taken personally. Often, these calls, especially among the elders, are just for passing time together.
Try to find reasons for those drives. Need milk? Bread? Cookies?
Do you have something to return to a sibling or friend? Turn simple errands into expeditions by taking a new route and look for streets with slow speed limits so you can take in the sights or discuss your surroundings.
Keep asking. Eventually, you’ll hear
“That sounds like a good idea.”
Make memories that might stick for future phone calls and perhaps one day, you’ll overhear:
I’m not sure when, but she took me to the museum and we saw things that reminded me of my childhood. … One day, we went out to some parking lot and just gazed up at the clouds, just like I used to do with my cousin, but we stayed in the car instead of lying on Momma’s porch. … We went to the church festival and it was nice to see all the people there; I didn’t know so many of them missed me. … We do so many things together; she and I bake cakes and cookies and we go shopping together!
You might not hear these things, but it won’t hurt to make the memories for yourself – just in case.
Take the steps necessary to prepare yourself for what awaits. Study, read, research and talk with other HANCs. Get ready for the good days and the bad and know there will always – and I mean always – be something you didn’t expect.