Posts Tagged ‘siblings’

Question from a reader

My father has Parkinson’s and my brother was his caregiver for years but he said he’s burned out and I need to take over as Dad’s caregiver. How can I avoid burning out like my brother did?

You must remember that if you don’t take care of yourself, you cannot care for your father. It is vital that you take some time every single day for yourself to prepare each morning and unwind in the evening. It’s not selfish. It’s part of healthy caregiving. Seek out other caregivers to talk to. Get into the habit of regular caregiver texts, phone calls and social meetings for lunch or coffee. Set up a schedule for time away each week, then reward yourself with a weekend away at least once a month. Take a daily walk, alone, if you can. Breathe deeply and purposefully. Nurture your hobby or start a new one. Stay connected to you friends and call on your brother for helpful advice. Find out what worked and what didn’t work for him and remember: this is not permanent.
Caution

Making it Easy for Others

House

When you make the life-altering decision to be a HANC, know your choice will affect others. Once you move into another person’s home, especially with your spouse, your life ceases to be exclusively your own. If that home belongs to a parent, your status as a competent adult will be challenged.

old woman

Regardless of frailties or medical conditions, your parent will always be your parent. You will hear things to make you wonder how your transition from child to adult had been overlooked. When siblings come to visit, they are not visiting you in your home. They are returning to their childhood home or coming home to Mom and Dad’s house. They will expect to find things as they had been for years and some will not be happy to see changes.

I need space

Make it easy on others by keeping things as close to how they were when you moved in. Change things slowly, subtly. It’s imperative to remember that your caregiving is a long-term commitment, if you are fortunate. It does not necessarily obligate you to live in another person’s home forever. At some point, your parents’ home may become your home, or you may return to a home of your own. Then, you can turn your energy toward redecorating or claiming your own space.

OLYMPUS DIGITAL CAMERA

Until then, remember to do what you can to make things easier for others, so they will want to make things easy for you. They may not ease your stress, but they might lighten your workload. Even if they don’t, maintain your sense of humor. Stay flexible. Remember why you made the decision to become a caregiver and know that this is temporary.

sign

I’d heard, “I don’t know where anything is anymore,” from my mother and, “You’ve moved everything,” from my sisters so often, I’d begun to believe the myth that I’d moved things in my attempt to organize.

grits note

So I did something I thought might help on the occasional days my husband and I left the house, something I never would have considered under other circumstances. I labeled the kitchen cabinets. I thought it would help when we took our first full weekend off, but my sister still couldn’t find the grits.

grits shelf

Just smile and remember the real reason you made the choices you did.

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.

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

Reverse Kidnap

Caregiving

Some days, being a HANC is so damned difficult I don’t know what to do. Other days I think my duties are ridiculously commonplace. I have been a housekeeper and activities director since my first son was born. I’m aware of nutritional needs and don’t mind being my mother’s companion. Still, when we abandoned our former lives to care for my mother, I faced other difficult choices.

fire! Fire!

The possibility of a serious burnout scares the hell out of me. I resent being the only one who empties my mother’s potty. Yet I’m infuriated when I recall the foul odor that prompted us to put our careers and lifestyle on hold.

Time

I want to be inspiring and motivational, but when I’m frazzled and weary, it’s difficult to remain upbeat. At night, I often collapse into bed, exhausted physically, still reviewing things undone. After an hour or so, disturbing dreams or body aches begin, or I am awakened to attend to her needs.

Wine

Taking adequate restorative breaks requires advance planning and coordination. Gone are my days of spontaneity. I no longer come home from a hard day at work and announce, “Dinner’s on your own,” as I trudge toward a hot bath with a glass of wine and a book. Because of my mother’s condition, structure and routine are essential for a peaceful life.

Pituful man

Recently, I held my first serious pity party. After all, who knows how long this could go on? My siblings are confounded I have taken on this role, and trust me, today I was doubting my own good sense. When I felt my pending calamity, I called on five members of my large support system. My husband, two of four brothers, one of three sisters and a nephew listened and gave me their sense of understanding. One had an undertone of, glad I’m not in your shoes, and one promised to give me some relief – tomorrow.

What's in his hand?

When I mentioned my rising frustration to my nephew, I didn’t think he paid particular attention, but later, his dad approached me as I pruned a blueberry bush. He said he wanted to trade what was in my hand for what was in his, and he held out the keys to his car and a little cash.

He said, “I have half a tank of gas. Take it as far as you can and get a drink on me.”

Hand off

I accepted his gesture and his keys. No planning. No discussion. No procrastination and no collapse!

Walk through sanctuary

I told my husband we’d been reverse-kidnapped and we took my camera for a sunset walk through a nearby wildlife sanctuary, though the wildest thing we saw were some human snowbirds. As the moon rose, we ate burgers at a local favorite and then went for those drinks.

rose

Since then, I have renewed my promise to walk more, garden more and make more time for myself. The roses don’t have a chance. I plan to smell each one of them this year!

I am not a Nurse!

Uniforms and hats

I’ve worn some interesting hats over the years, but of all the hats I’ve worn, a nurse’s cap was never one.

             Ask my brothers and sisters and they will tell you that I am not a nurse. I’m the family erudite. As a child, I played school, not hospital. I pretended to be a teacher, not a nurse or a doctor.

            So, why did I volunteer to become a caregiver? Why am I my mother’s HANC?

Woman on scooter

She needed help with Housekeeping, because her limited mobility prevents her from doing all but basic cleaning and home maintenance. This same handicap, brought on by the fall that broke her hip and precipitated an entire shoulder replacement, controls the amount of Activities in which she can participate.

good food

Her dependency on a walker and her failing memory restrict her ability to prepare Nutritious meals. Although she has lived alone for nearly three decades, it was clear her limitations were preventing her from many social interactions; she needed Companionship.

            She needed a HANC, not a nurse.

woman on phone

Every day requires I employ my Housekeeping and Nutritionist skills, but the need for me to be her sole Companion changes if friends or family call or come to visit.

book

Her willingness to engage in activities other than watching television, crocheting or working word puzzles  is contingent on her energy levels. If her overall health declines, she needs a nurse, not a Companion or Activity director.

She’s had a few bouts of illness. Only one, so far, resulted in hospitalization. That’s when I realized I am not a nurse.

tray of medical items

Nurses run on schedules and panicked calls from patients. My shifts run twenty-four, not eight or even just sixteen hours. Some nurses taught me how to control her pain by adjusting her body and supporting it with pillows. Other nurses taught me the strength in a gentle touch and the power of a calm demeanor. Some taught me they care more for a patient prior to receiving discharge orders than they do for those eager to go home.

pain meds

One nurse displayed a preference for medication rather than providing attentive nursing care.

Unfortunately, I learned my mother respects a nurse’s authority more than her daughter’s opinion. Still, no matter how caring, compassionate and qualified a nurse can be, family is always better.

family photo

Even a family as goofy as mine!

Forced to Follow my Dream

Since becoming my mother’s Housekeeper, Activities Director, Nutritionist and Companion (HANC), I face new challenges daily. In some ways, on some days, it’s as if I am responsible for an 85-year-old toddler. Without family intervention, her meals would be meager and lonely, her health declining rapidly.

man on motorcycle

Prior to moving, my sister, Jane, or my brother, Joe, cooked for her, but they weren’t able to be on hand daily to ensure she ate what was prepared. That’s my job, now.

Without my support system, I might have burned out quickly. By far, my biggest supporters are my brothers and sisters. Each in his or her way has provided invaluable assistance. Some have taken us out to dinner.

family phot

Others have brought food or even tea parties to us. Some have helped with yard work. All have given words of gratitude and encouragement.

tea party

Jane offered to give my husband and me one weekend off each month.

I had no idea how important that would be, but Jane knew.

What a gift!

Gift with a bow

When we first moved in, I needed some time to unpack and assimilate.

boxes

We all needed to adjust to the new lifestyle. We were here three months before our first weekend away, which meant it was all the more important – but what a fiasco! We’d started planning a trip to a local resort town, but something didn’t feel right, so we decided my husband would follow his instincts and use “the force” to direct us on our spontaneous adventure.  My well-intentioned sister didn’t realize that my night-schedule husband wouldn’t wake at dawn, as hers would have. I knew this, so I promised her I’d call when we were leaving, but she came early. It all worked out well, but it seemed as if we were being rushed that day.

traffic jam

We drove an hour to North Charleston, where he surprised me by taking me to the Fire Museum, a wonderful visual tribute to firefighters all over the world.fire museum

That evening, we enjoyed a sumptuous meal and sat outside our less-than-ideal hotel/motel room watching a feral cat colony. The next day, we drove to historic downtown Charleston and the Battery where we started making plans for a future trip.

customs house

A short drive to the Isle of Palms, where we toured the island and I took photos, took us past the Windjammer Beach Club and we modified our plans. My husband then drove us to Sullivan’s Island. He  stopped so I could take some photos of the historical monument that described an early battle during the Revolutionary War.

monument plaque

Then we saw him.

A young man was rising out of the water, a hose attached to a jet ski. He rode on a stream of water, hovering the inlet. It was the highlight of our day.

jetski rocket

I have wanted to travel, for as far back as I can remember.

Wait. That’s not accurate or truthful.

Bernie

My first memory is of my sister Bernadette “Bernie” and me making cucumber pies. I was five and she was almost four. We lived in the largest house I can remember for my family of ten, although at that time, the “babies” had not yet been born.

The house was situated on a corner at the intersection of two major thoroughfares. Long before interstate travel sped by on freeways created for the purpose, travelers used these small-town highways.

On one hot summer morning, our house roused to the sound of a collision and we knew a large truck had been involved. This one had been filled with cucumbers. Housewives and older children rushed to the intersection to help clean up the debris so traffic could resume as soon as possible. My mother pickled what she could and those too bruised or broken became playthings for Bernie and me for a day. We made the best-smelling mud pies in town.

reading

When I wasn’t making mud and cucumber pies, I was reading. I don’t recall a time in my life without books. Once I started school, I read even more. That’s when thoughts of travel first entered my mind. I longed to visit exotic places I’d read about and for many decades, I believed travel meant passports, airfare and foreign countries.

I’m reconsidering my perception.

passport

To be certain, I do own a passport. It’s in almost pristine condition, though it will soon be time to renew it. I have traveled outside of the United States, but barely.

cruise ships

Although I enjoyed it thoroughly, traveling on a cruise ship is an extremely limited sort of travel.

Hawaii hello

My husband and I have dreamed together of being able to spin a globe to stop it with a finger on “Where shall we go next?” knowing our dream is tied to our budget. Outside of a few cruises and some outings while visiting family, our travel has been limited – in location and ambiance.

As another month approaches, we are faced with a dilemma.

sign

  • Where should we go?
  • What will we do when we get there?
  • What kind of restaurants will we find?
  • Do we want to visit the typical tourist venues or go off that path?
  • How can we avoid another iffy hotel, when the online rating system is flawed?
  • Can we really afford to spend the night away each month?
  • Can we afford not to stay overnight?
  • How much can we, with our current jobs, afford to disconnect?

We think we have a solution.lottery

Scaling down our global travels dream (until we win the lottery), we’re going to put names of cities and towns in a hat or a box or a basket or maybe just stack them like playing cards.

hat and cane

Each month, we’ll draw out the name of that month’s destination for our weekend away.

There are no rules, but we do have some guidelines.

  • No location should be more than a three to four-hour’s drive from home. This will ensure we can enjoy our destination as well as the journey to get there.
  • We’ll spend a little extra for nicer accommodations, even if we have to skimp on our main meal out.
  • Some months, we will pack a picnic basket, depending on our final destination.
  • Each location should have some draw: a museum, an aquarium, a historical monument, a botanical garden or some other special amusement.
  • We reserve the right to change our minds.

wine

Now, my task is to locate cities and towns that fit our criteria, set up the cards with options for entertainment and search out accommodations.

historic inn

If you have any suggestions for exciting destinations or locations within a few hours from the Charleston/Columbia South Carolina or the Savannah Georgia areas, I’d love to know about them. Please, leave me a comment with your suggestions.

Better you than me

busy as a bee

Being caregiver to an elderly loved one is similar to parenthood. The demands don’t end after an eight-hour shift. Downtime is minimal. Some days, no amount of expressed gratitude can compensate for the private sacrifices and personal exhaustion.

two bees

Married HANCs who choose to provide Housekeeping, direct Activities, prepare tasty, Nutritious meals and offer fulltime Companionship may find privacy especially precious. It’s vital to seize moments of intimacy and search for opportunities to be alone with your spouse while maintaining balance in your care-giving roles.

solo bee

Conversely, it is essential to find time to be alone, with friends and to seek personal activities that sustain and support emotional stability. This is particularly important for the solitary or single HANC.

bee duo

The role of companionship for yourself is no less important than providing healthy meals or stimulating activities and maintaining a well-kept home. Remember why you made the decision to become a HANC but don’t let the decision monopolize your life.

fuzzy bee

            From time to time, you will hear things that affirm your decision.

fat bee

A sister said, “Thanks so much for being there—1,000 times.”

Thistle flower with bee

When a friend learned of our move, he wrote in an email:

“I think what you’re doing is fantastic. I wish I could have been there for my father more than I was at the end.”

bee on flower

A business acquaintance told me, “You are doing a wonderful and selfless thing.”

Florida bee

A brother wrote, “Thank you again for your being there. I am so grateful to you for taking this leap in faith to move in with Momma.”

Marigold bee

A colleague wrote, “You have sacrificed a lot to be there for your mother.”

Pollen hunter

Yet one of the briefest and most profound statements came from my sister-in-law.

Better You Than Me!

Take a Break. It’s more Important than you Think.

Since becoming my mother’s Housekeeper, Activities Director, Nutritionist and Companion (HANC) I face new challenges daily. In some ways, on some days, it’s as if I am responsible for an 85-year-old toddler. Without family intervention, her meals would be meager and lonely, her health dwindling rapidly.

woman in blue shirt wearing glasses

Joe plays guitar

 Prior to our moving in, my sister, Jane, or my brother, Joe, cooked for her, but they weren’t able to be on hand daily to ensure she ate what they prepared.

That’s my job, now.

When I told Jane of our decision to move in with Momma, she told me, “You have no idea what you are getting yourself into. It is much more work than you think it is and it’s not going to get easier.”

She was right. Being a HANC is a tremendous honor and an enormous responsibility.

Without my support system, I might have burned out quickly.

family

By far, my biggest supporters are my brothers and sisters. Each in his or her way has provided invaluable assistance. Some have taken us out to dinner.

tea party

Others have brought food or even tea parties to us. Some have helped with yard work.

All have given words of gratitude and encouragement.

Jane offered to give me and my husband one weekend off each month.

gift

What a gift!

I had no idea how important that would be, but Jane knew.

When we first moved in, I needed some time to unpack and assimilate. We all needed to adjust to the new lifestyle. We were here three months before our first weekend away, which meant it was all the more important.

We’d started planning a trip to Hilton Head, but something didn’t feel right about it, so we decided my husband would follow his instincts and use “the force” to direct us on our spontaneous adventure.

museum

We drove an hour to North Charleston, where he surprised me by taking me to the Fire Museum, a wonderful visual tribute to firefighters all over the world. That evening, we enjoyed a sumptuous meal and sat outside our less-than-ideal motel room watching a feral cat colony.

library

The next day, we drove to historic downtown Charleston where we started making plans for a return trip.

A short drive to the Isle of Palms, where we toured the island and I took photos, took us past the Windjammer Beach Club and we modified our plans. We then drove us to Sullivan’s Island.

signbattle sign

 

My husband stopped as soon as he saw  the historical monument depicting the Battle of Sullivan’s Island.

Then we saw him.

ski on air

A young man was rising out of the water, a hose attached to a jet ski. He rode on a stream of water, hovering over the inlet. We watched him until he stopped his water and air show.

It was the highlight of our day.

Revived by his enthusiasm and athleticism, we returned home with great memories and hundreds of photos to share. We can relive the weekend with Momma, which should spark some stimulating conversations.

 

 

 

 

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