Archive for September, 2012

Am I a HANC or a Don Quixote Girl?

windmill     The Life of a Caregiver is not an easy one. Whether the caregiver is a health professional doing shift work in a facility or a family member, the demands placed on a caregiver can be overwhelming.

     I‘m fortunate to have been born into a large family and some aspects of my job as a live-in Housekeeper, Activities Director, Nutritionist and Companion (HANC) were in place before my husband and I made our life-altering decision to relocate.

      This site is my catharsis and my connection to other caregivers and families contemplating some of the hardest choices before them. It has also become a link to caregivers who have walked the path before me.

     Two such caregivers were recently introduced to me through a mutual friend and fellow writer, John J White, whose work reminds me of O.Henry crossed with Edgar Allen Poe.  His blog, Give it up, You’ll Never be Published provides a humorous look into the  life of one of the most prolific and talented writers I know.

     John and I met when I facilitated meetings for the Florida Writers Association in Melbourne, Florida. I abdicated my position with FWA after I became editor for Bluewater Creative Group and I realized I would burn out if I didn’t learn to say “no” and “I’ve had enough, thank you.”

     Now, I live more than 300 miles from John, but he and I still meet via Skype, with three other skillful writers: H.V. Rhodes, who has released the second edition of his Brain Dead Manager as an eBook; Athena Sasso, the editor of the Beachside Resident was recently highlighted in FLARE, a publication produced at Flagler College and A.M. Frakes, a young Sci-Fi/Fantasy novelist who evokes writer’s envy among his older peers.

iron keys

     John unlocked an invisible barrier when he forwarded an email from Karlene Conroy. Through Facebook, she discerned the friendship John and I have developed over nearly a decade. As the current co-leader of the same organization that propelled John into my life, she has come to know him as well, so she asked for an introduction, believing I could be instrumental in helping her publicize her book in Senior Life.

     Unfortunately for Karlene and her co-writer, Mia Crews, my largess with Bluewater Creative Group is extremely limited at this point. I did pass along some helpful information and within a few days, she had made contact with the office. Fortunately for me, Karlene and I made an immediate connection online.

famliy treasure

     One of the reasons for our quick connection is also the basis of Karlene and Mia’s book, The Don Quixote Girls, which is receiving rave reviews.

     Karlene and Mia both served as caregivers for their parents, which inspired their hilarious novel.

     Reflecting the humor in the book, The Don Quixote Girls website’s Join the Club button asks: Are you a Don Quixote Girl? and has an expanding list of suggestions, which prompted my own list.

 

sword

  

   I may be a Don Quixote Girl, who, like Cervante’s original Don Quixote, am battling my own windmills.

 

      You, too, may be a Don Quixote Girl, if:

  • Your mother calls to ask you to pick up milk, butter and eggs and insists she has no bread or cookies at home and when you deliver them, you find multiples of each. Every one has been opened and there are three opened jars of peanut butter and six boxes of expired cake mixes – all the same flavor.

 

  • You don’t know whether to be thrilled or worried when you see your mother working her crossword puzzle in ink, then she tells you the words don’t fit in the squares and you realize she thinks she is doing a find-a-word book.

 

  • Your mother announces that she isn’t hungry when you offer her a glass of freshly juiced fruit and vegetables at 11:00, but as soon as her game show ends at 11:30, she starts demanding lunch.

 

  • Your mother offers to help prepare dinner, so you hand her a knife and a tomato to slice. She presents them beautifully arranged on the unwashed cat dish.

 

  • When you move your mother’s toilet paper spindle to her bedroom so it is near her potty chair, you later find she has put fresh rolls on the handle of the plunger and placed it where the spindle had been and you see how fast you can move to set this right and buy a new spindle!

 

  • You reconnect with nature and take an unusual interest in yard work or gardening just so you have an excuse to go outside in the heat of the day, so you can be alone.

Now, just like Don Quixote, I am seeing windmills everywhere!

Cervantes Don Quixote

 

New Beginnings in Old Surroundings

    We’ve passed our first month on the calendar as HANC (Housekeeper, Activities Director, Nutritionist and Companion) and some days it seems we just arrived at my mother’s house. Other days, it seems we’re settled in and our routine is time-tested and sturdy.

As difficult as it is to move, relocating more than 300 miles away is even more trying. We were both fortunate that we weren’t also moving to new jobs and the challenges that provides. Although Curtis has worked remotely for many years, this move did present its share of slowdowns for him. I was a little better off with my job not needing quite the level of technology that his requires and I was able to get right to editing soon after our move.

     Of course, it’s always a struggle to move, but to move into a fully furnished house that has been home for nearly 5o years was a first for both of us and somewhat unsettling for my mother.

     She’s been living alone since my father passed away in the early 1980s with little exception.

     Not long after my father’s death, my brother David joined the military and she was completely alone for the first time.  From time to time, she’s hosted her children and others who visited for a week or more, but she’s mostly been alone.

 

 

     More than 20 years later, she remarried. A year later, shewas a widow and lived alone, again.

 

 

 

     Now, here I am, with a husband and a very vocal cat, disrupting her life. She thanks us several times most days and apologizes for not being able to fully express her gratitude. 

 

     Other days, she exerts herself as the homeowner and defies me to make any changes – even to the kitchen, which she said is, “yours to do with as you please.”

 

 

 

 

 

 

 

 

 

 

 

 

We’re all spreading our wings, trying to see what we can do to “make this work.”

Great Blue Heron flies over lake at sunset

 

     One of  the first dramatic obstacles was finding a workaround for her aging air conditioner. For months, we thought Momma had been adjusting the thermostat, and there is some truth to that; but her adjustment wasn’t the only problem with the fact that many afternoons, when my sister, Jane, came to take Momma for her appointment at the hair salon, she’d find the house was in the mid 80s.

      When we visited in April, my husband, Curtis, thought it might be helpful to install a programmable digital thermostat, rather than the old-style mercury slide she’d had for years. The digital didn’t help much. Two months later, when we moved in, we found the house was still stiflingly hot. So, we called a repairman to come service the unit. The next day was one of the hottest days on record in this state and the 18-year-old unit could not keep up with the heatwave. When repeated calls to the repairman went unanswered, we called others.

     One came out and did a more thorough service job and by the time he left, the unit was cooling again. Our comfort was short-lived, however. The service call could do only so much. Hot air was leaking in through the un-insulated attic and old windows. We could literally feel the hot air coming in through some cracks.

     The first line of defense was to purchase a window air conditioner as an auxiliary unit. Once that was installed, thanks to Curtis and Matt, we realized we still needed to address some of the larger air leaks, Curtis and I put a sheet of insulation inside the hall, covering the gaping area surrounding the attic access and could immediately feel a coolness. Still, the hot air comes in, but we’ve learned which doors to close to keep the house reasonably comfortable – also, we rely on ceiling and floor fans to move the air through the house.fan

 

 

 

 

 

     I’ve had to readjust my daily goals. Now, I’m satisfied if I can unpack just one box  instead of hoping to complete a room. That way, I’m not exhausting myself every day.

 

      I also discovered one thing that helps me with stress – and there is more than enough of that to go around! Today, I had an incident where I was overwhelmed and Momma made a snarky comment.

night fire

      I decided I needed a fire. I wanted to burn things. We’ve had some rain and I felt my fire pit was safe, so I carried all the paper I could find outside. I also gathered some limbs and twigs and added old wooden shelves from the open shed to the inferno. The paper burned and the wood smoldered. I put some things in the better storage shed and I sweated. I kept moving and moving and moving.

bed made up

 

 

 

     By the time I’d moved things and burned things and was too tired to move any more, Momma had gone to bed.

 

      I missed saying, “goodnight” to her, but I didn’t lose my cool with her, either.

 

Black and blue butterfly

 

    

 

     Like the butterfly that landed on the window air conditioner and needed to warm in the sun before taking off, I needed the warmth of the fire and movement before I could remember why I am here – for my mother.

     My family and my life have changed dramatically. No longer am I a simply a wife and newspaper editor with weekends free to explore, shop and lounge about. Now, instead of concerning myself with what to prepare for dinner for my husband and myself, I must consider all three meals for us as well as my mother, whose medications, more than her health, make dietary restrictions a matter of life and death.

      A few months ago, it wasn’t important whether or not I skipped a meal. Today, I can’t risk it. Last winter, I needed only to worry about my own health and welfare (and my husband’s) but today, it’s vital that I not only maintain a healthy lifestyle for myself, I must also take steps to ensure my mother’s life is as stress-free as possible, too.

     I am a HANC. I manage the housekeeping, family activities, nutritional needs and provide companionship for my mother.

     Returning to my childhood home, I am making new beginnings for all of us, in old surroundings. The adventure has started.

Two Weeks as a HANC

When we visit our parents as adults, we want to believe everything is under control, as it was when we were children.

     We may see or smell things we’d rather not, but to keep the fantasy alive, we tend to ignore them.Gransmomma and siblings

   Usually, we make a point to clean something or do some yard maintenance on our visits, but mostly we visit, because our parents want to spend TIME with us, not watch us work.Clock in town square 

     Once we are back home again, we can pat ourselves on our backs for whatever we did. We might tut-tut to our spouses or siblings and think about what must be done “one day,” but we don’t want to believe our parents are anything less than super-humans. We want to remember them as strong and independent, virile and always capable.

Matt's guns

 Those of us with large families hope someone else will inevitably step up and take charge.

      For me, living more than 300 miles away, I had no option but to allow my sisters and brothers who lived closer to do just that. Each did what could be done  around schedules and personal requirements. Each filled a special role.

     My role was to visit as often as my job allowed and do what I could during the few days I was “home.”

     Over the years, our mother’s physical capabilities have declined and her memory lapses have worried us more and more. We have talked one-on-one with each other, but never as a collective family about her increasing need for more companionship, better nutrition, help with housework or more diversions to help her focus mentally.

variety of produce

     Once, my sister’s husband was driving Momma’s car, with Momma on the front passenger’s seat when Momma became startled by what she thought was an oncoming car.

      Momma decided for herself that she would no longer drive.

      She didn’t suffer the indignation of having her driver’s license taken from her, but she told me she misses not being able to trust herself behind the wheel of a car. She still loves to “take a drive,” and told me after her recent trip for bloodwork, “This is fun. I don’t care if it is just to the doctor’s office and back. I like to get out of the house.”

Oak tree lined dirt road

      Now, that we are living here, I can take her for a drive any day of the week. We don’t even need a destination.

 I hope to do more of this kind of driving once we are unpacked…at least, maybe after I have finished cleaning the kitchen. Goals are good.

redundant swiffer

     I try to clean, organize and unpack a little each day and I hope we aren’t confounding her, though sometimes, I think we must. There have been some incidents that make me know we need to be here and I am tempted to take over, but she loves her independence and I must remember she handled all her daily-living activities long before we moved in. She is proud to load or empty the dishwasher, but I do all the meal preparation – sometimes with her nearby. She still is able to do laundry, and I am pleased to allow her that chore. Today, she patched a pair of my shorts that had ripped. I would have probably worn them, ripped and all, until I could no longer do so. She enjoys doing needlework and I may end up in patches, but each one is lovingly stitched.

 quilted

     She is headstrong, but reasonable.

    Some changes make her wonder, “Why, after all these years, do I need to do that?”

As long as we explain what we are doing and why we must do it a certain way, she accepts the changes with grace. She just needs to know why.

 

     For many years, she has lived in a house with almost no insulation in the walls or attic, which makes her air conditioner work harder than it needs to. It also makes the house extremely hot during the summer. She’s on blood-thinning medication, which means she is relatively comfortable in a house that is warmer than 80 degrees. What she doesn’t seem to understand is that at 84 degrees or even 90, as it was one day, her thinking is impaired. She was very grouchy during the hottest days. She didn’t want us to purchase a window air conditioner, but when I told her we needed to, so I could cook and clean, she accepted it. We paid for it, but she’s not always certain she didn’t buy it.

    

     We can’t easily open most of the windows to allow a cross breeze and the roof has no venting for the heat. I noticed her mood improved when we were able to cool the house to anything below 78. She has started wearing a knitted shawl in the early mornings so I can do my household chores in more comfort. We compromised without even discussing the problem.

      At times, she smiles when I do something my father used to do or that she once did, but can no longer do. Nostalgia can be good.

     She has been writing her memories in a variety of notebooks and they are random. She knows there is no “book order” to them, but I hope to share them, soon.

Journal pages blank

     She retells stories, not remembering that she may have told the same story, almost verbatim, a day ago – an hour ago – five minutes ago. We do our best to listen and react as if it is new. Sometimes, she stops herself or asks us to stop her if she is repeating.

     Sometimes, she simply forgets things. “I never” and “I know I didn’t” precede many declarations. Whenever I remind her, respectfully and gently, in detail, she usually says, “Oh, yes. Thank you for reminding me.” It must pain her to know that her memory is slipping away from her. She often says, “I pray all my children can live long lives, but I do hope you can be healthy and not like me.”

      The worst for me is when she and my husband each want my attention at the same time and neither knows the other is also speaking to me. Some days, I just want to cry. Some days, I do.

 mom and son

 

     This is but one day in our new life adventure. There are many challenges and many rewards. When I moved out of this town nearly 15 years ago, my mother managed a hotel and was one of the most amazing people I knew, physically, emotionally, intellectually and there were few women whom I felt compared to her. I still feel that way about her.

I wanted to live an adventurous life in a city and for three years, I did just that. Then, we moved to a smaller city and my life became that of a suburbanite career woman. I immersed myself in my job and was content to visit my family whenever I could, but I also contented myself to vacation in more exotic venues as often as money permitted.

       Now, I have returned home to a more bucolic life and it’s good.

 

torch

     As I listened to a whippoorwill while standing between two tiki torches that kept the mosquitoes at bay  I thought about today’s achievements in addition to my editing and writing. It is good. It is very good, indeed.

 

 

 

 

 

 

Living in an Empty House

     I left my parents’ home when I was eighteen.

     Rather than going off to university, I moved into a small, one-bedroom cottage with my teenaged husband. We married in mid-November, so in addition to toasters and food storage containers, some of my first shower gifts included boxes of pretty, sparkly things to make our first holiday a special event.

 

Christmas wreath

 

     My life took an unplanned turn, when after twenty-five years of marriage, I packed the Tupperware and Christmas ornaments and left him.

storage containers

  

 

 

 

     Telling my mother was harder in my mind than in reality. She fully supported my decision.

mom and me

    

     At that time, she was a vibrant woman in her early seventies. She managed a busy motel near the Interstate highway that runs through the town where she was born. I knew my mother would always be strong, independent and self-sufficient. She had lived alone most of the twenty years since my father’s death.

 

highrise in Atlanta

     A year after my divorce, when I told my mother I was moving to Atlanta to live with a much younger man, she withheld judgment and told me to follow my dreams and my heart. She reminded me I could always come home.

couple laughing

 

 

 

 

   

       I packed everything I had, loaded boxes into a truck and drove to my new home–an empty place, ready to receive whatever I could squeeze into it.

     Now, more than a decade later, I’m packing again. This time, when I pack the Tupperware and Christmas ornaments, things are different. My years of collecting and moving, salvaging and saving have me sorting and scrutinizing my knick-knacks and whatnots.

box with christmas ornament

     After making the necessary decision to move in with my second husband to become my mother’s Housekeeper, Activities Director, Nutritionist and Companion, or HANC; the harder decisions come daily when each plate and pillow, my books and blouses, every file, folder, fan and forget-me-not must be relegated to one of three categories: tag it and sell it, move it or reconsider later.

stuffed fish

 

 

     If I make smart decisions, my possessions will become yard sale shoppers’ bargains.

 country house behind large oak tree from road

My mother’s home is small, but it has all the essentials including appliances, linens, dishes and more than its share of bric-a-brac. Soon, it will have three more residents – two adults and a small cat.

 

It seemed so much easier when the houses were empty, but who wants to live in an empty house?

abandoned house

 

 

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Role Reversal Reverses Roles for a Week

medical equipment     When my mother was hospitalized for her last fall, one of the doctors  told the family to prepare for her to be placed in a nursing home.  At the time, I was living more than 300 miles away, but my sisters and brothers kept me posted on her situation until I could come spend some time with her.

     Seeing her in the hospital bed on a morphine pump for the pain in her hip, ribs and shoulder was difficult, but watching her reaction to the medication during the times between the pump was one of the hardest things I had dealt with up to that point in time. She was hallucinating and she was afraid.

     The family made arrangements to hire someone to assist with her daily needs during her rehabilitation at home. We all agreed to avoid a nursing home at all costs, if possible and I suppose the seed was planted at that time for me to eventually become a caregiver for my mother. I never saw myself as a caregiver and to use that word in association with my mother causes me discomfort.

 

With home health nurse 7-11-10with visiting nurse 7-11-10     In home nurses and therapists monitored her progress and encouraged her to do more than sit in her chair and watch television.

     Still, with limited mobility and a fear of falling again, she prefers sitting to moving and her mild Alzheimer’s disease seems to be the reason she prefers game shows and court TV to her former active social life. Add to this, her hearing difficulties and some days become much more frustrating than others.

    If I’m off my game, even a little, I can’t provide the care my mother needs and we both feel the difference in our relationship. I want, always, to be the best Companion and Activities director for her, in addition to a skilled Nutritionist and Housekeeper, but even the best HANC has limits.

     Knowing those limits is key to a successful relationship.

Today, I felt vulnerable and so typed in “Dealing with Dementia” online. One of my first links led me to the manufacturer of one of her medications. I found great information here.

Flexibility Is the Key to Working Together

The changing relationship between the person with mild to moderate Alzheimer’s disease and the caregiver is a lot like the relationship between two ballroom dancers. When a couple dances, one person is the leader and the other is the follower.

In your relationship now, the caregiver may have to do a little more leading and less following. And the person with mild to moderate Alzheimer’s disease may need to find a way to follow that is comfortable.

Fortunately, Alzheimer’s disease usually progresses slowly, and in most cases you can shift your roles little by little. Being flexible is required. That is usually true for successful relationships. So, if you can stay flexible, you are likely to find ways to be close to each other. And that is staying connected.

 

big old oak     As strong and stalwart as the oak in her yard, my mother would never ask for help. She didn’t turn it down, though, when offered and she has been very appreciative of our presence.

     There are times I feel as if I have a very opinionated, 85-year-old toddler in my care and other times I am very much her child. The past week was the latter, as I was dealing with a migraine as well as simple hay fever and I simply did not feel like doing the things I came here to do.

     It may have empowered her to be in charge again as she did her best to help take care of me.     daffodil closeup

 

 

 

 

 

 

 

 

 

 

 

 

Make mine to go

waffles, pancakes, strawberries     When I wake from this dream, please have my breakfast ready. Can you make that to-go, please? I’m going to be in a hurry.KFC cup

I’m about to start a new life. I’ll have to stop sludging around in the mornings, following the same ritual I created years ago. No longer will I be able to nosh on whatever suits me while I amble off to work, choosing to eat – or not eat – lunch with the girls at the office.

Woman at restaurant

My carefree days of taking the scenic route home from work or solo retail therapy will end when my new life begins. I may have seen my last mall, though that in itself isn’t going to hurt much.

 

trees on Rockledge Drive

 

I’m becoming a HANC. My mother needs a Housekeeper, Activities director, Nutritionist and Companion. She also requires a mechanic and general handyman. My husband and I have assumed those duties and as soon as my dream ends, I’ll be on call.     carpenters square

 

My mother’s low-level memory loss and physical frailty have reached a critical point where something must be done sooner, rather than later.

Scooter cuter

I’ve had time to adjust and acclimate to the changes. I’d like to think I have, at least.alarm clock

 

Many mornings, long before my alarm sounds, I wake in a panic before I realize we haven’t moved yet and I need save my mother from another non-nutritious breakfast of cookies and coffee.

 assorted cookies on gold charger

Some nights, as I collapse into bed after packing, I wonder who will ultimately have to make the most adjustments in this new lifestyle.

items prepped for moving

 Long ago, the rural childhood home to which I am returning nearly smothered my essence. I craved more.

 

 St. Pete Street

 I wanted the city lights, the culture, the streets and the convenience of living a life I felt entitled me to be the person I thought I would become. Today, it feels as if the shackles of illusion have been broken and I know I never really was a city girl. I don’t fit in with the beach communities and I don’t belong in suburbia. I’m going back to my bucolic roots with a new resolution, a new purpose, a new sense of how to be the me I was always meant to be. Me without constraints, without rules, without neighbors.

 fruit platter

    I’ll have to be more diligent about my own health, so I can care properly for my aging mother. If I don’t maintain a healthy mntal, emotional, physical and artistic balance, I won’t be a proper HANC.

 woman on truck

 She may even teach me a few new tricks .

 

 

 

 

 

 

 

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