Posts Tagged ‘empowered’

Are you Burned Out?

If you can no longer remember what compelled you to become a caregiver, you just might have caregiver burnout! Remember, you cannot care for anyone if you do not first care for yourself. There is nothing wrong with asking for help from family, friends or agencies that can provide respite care. Be strong enough to take care of the caregiver.

If you answer yes to these questions, it may be time for you to take a break or re-evaluate your situation. Don’t smolder and burn until you explode.

  • Has it been more than two months since you’ve had a weekend to yourself to do whatever you wanted, even if that was to do nothing?
  • Have you cried for what seems to be “no reason at all” in the past week?
  • Have you neglected your own medical needs since you started caregiving?
  • Has it been more than a year since you visited your dentist or found a new one if you moved to start providing care?
  • Do you feel tired and listless most of the time?
  • Have you abandoned beloved hobbies due to lack of time or interest?
  • Are you more easily angered or upset than you used to be?
  • Is your fuse shorter than before you were a caregiver?
  • Has your patience decreased?
  • Do you think you will never have fun again?
  • Have you considered self-medication for depression or anxiety without consulting a physician?

Before any more time passes, seek help.

  • Ask a family member to visit more often and when they visit, if you can’t leave for long, take a walk outdoors. Enjoy the fresh air by yourself a few moments.
  • Invite one of your friends and one of your loved one’s friends over for lunch or dinner. Socialization is important for both of you.
  • If you have no local friends or family, check into agencies that provide respite care so you can take care of your own medical and dental needs.
  • Get a massage, pedicure, facial or manicure. If you can’t afford these, find a friend who will listen and give you a simple backrub.
  • Visit a nursing home, alone or with the one in your care, to gain perspective.
  • Practice gratitude. Think of one thing about your situation for which you are grateful. Every day, add to your list.

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

Education is a Caregiver’s Friend

Library booksYou will repeatedly read about burned-out or stressed-out caregivers because stress is one of the most common features among those who provide care for their loved ones. The stress comes from many sources such as constantly worrying they aren’t doing enough or aren’t doing the right thing the right way. Also, it is the result of working long hours and feeling unappreciated. A prime cause of this stress is inadequate preparation prior to joining the ranks of family caregivers.

Caregivers must educate themselves on whatever medical conditions their loved ones have and learn as much as they can about nutrition, possible side-effects of prescriptions and how to motivate or engage people who may seem content to waste away. It’s vital for caregivers to discover all they can about local support groups and community resources as well as the challenges of aging and the demands on caregivers. It’s essential for caregivers to know their own physical and emotional limits. Burnout comes from many sources, so it’s important to know ahead of time, who will be available to help in an emergency and where to find daily comfort.

Hydrant

If you want to take a break without feeling guilty, enroll in a Red Cross CPR/first aid class. You’ll have a few hours to yourself, be able to socialize with others and learn or brush up on a useful skill. If there isn’t a local Red Cross office, call your fire department and request a class.

 

 

What is the cutoff point? Exactly when can you stop crying, stop caring and start getting your own life back?  There is no easy answer for this. Sometimes, the end of caregiving comes when the ones in our care recover enough to care for themselves, but more often, caregiving ends with the death of our loved ones. The fact that you are a caregiver means you can’t stop caring, even if you stop being a caregiver. You will never regain the life you had before, but when caregiving ends, your life will be richer for the experience. Years from now, you may long for just one more day, despite the sadness and anxiety you feel now. The key is to find ways to make your caregiving experience work for both of you. If you have a respite schedule set up, use it consistently. Step away. Seek help from family, friends or local agencies. You may need to make many phone calls or research online for hours, but help is available. Whatever decision you make, guilt should play no part. If you have to walk away from caregiving for a few hours, a few days or a few years there is no reason to feel guilty. You are doing the best you can and for that, you deserve to spend whatever time you need to take care of yourself.

Most often, caregivers are family members with little or no formal training on how to provide nursing care for their loved ones. They might feel guilty about illnesses or injuries that occur under their care. Education is an important element for caregivers. You don’t need to know everything about nursing or nutrition, just be open to learning about those who can provide the missing pieces of the puzzle. If you are a caregiver or contemplating becoming one, learn what options are available to you. Discover alternative sources for respite and get creative when you need guilt-free time away. Spend a few hours at the library researching respite agencies or schedule a visit with a nutritionist to discuss your loved one’s dietary needs. Take a day off to plan activities both you and your loved one can enjoy together by educating yourself to what’s available in your neighborhood. Check with your library and local hospitals for classes on health-related topics. Learn all you can, then relax and let the experts help you create a better life for your loved one.

Learn all you canKnowing that you don’t need to know everything is crucial to lowering your stress level. You can relax more if you simply coordinate experts who will care for your loved one’s special needs. There’s no need to hire a personal chef, but if you consult a nutritionist for menu ideas based on your loved one’s dietary needs, planning meals will be much easier. If your loved one needs physical therapy or has a regular hair appointment, you can use this time to take a short break, even if it’s a walk in the parking lot or a quick phone call to a friend. Sometimes, just putting space between you and the one you are caring for helps adjust your stress level.

Email your questions about caregiving to mary@marybrotherton.com

Caregiving Ends but Giving Care Continues

End of days

Even though my immediate HANC tour has ended, my writing about caregiving has not. I’ve been writing a column for Senior Life called Caregiving Counts as a way to continue my tribute to my mother and to HANCs everywhere.

My first column was simple, yet important tips for caregivers that I pulled from the Internet. Here is where you can read the full  article.

You may also read here:

10 Tips for Family Caregivers from caregiveraction.org

  1. Seek support from other caregivers.  You are not alone!
  2. Take care of your own health so that you can be strong enough to take care of your loved one.
  3. Accept offers of help and suggest specific things people can do to help you.
  4. Learn how to communicate effectively with doctors.
  5. Caregiving is hard work so take respite breaks often.
  6. Watch out for signs of depression and don’t delay in getting professional help when you need it.
  7. Be open to new technologies that can help you care for your loved one.
  8. Organize medical information so it’s up to date and easy to find.
  9. Make sure legal documents are in order.
  10. Give yourself credit for doing the best you can in one of the toughest jobs there is!

Each month I include a question of the month such as this one:

My father has Alzheimer’s Disease and some days, I just don’t think I can manage when he yells at me and tells me to go away. What should I do?

The best thing you can do is remember that everything ends. One day, you will wish your father was still around to yell at you. When he has tantrum moments, try to understand he isn’t trying to hurt you. The disease causes him to say things and act in ways he would never do, otherwise. This isn’t personal, but it does hurt. Be sure you have a strong support system you can call on at these times and as soon as you can, put some space between your father and yourself. If it’s safe to do so, take a walk when he demands you leave. By the time you return, he will likely have returned to his gentler self.

Some months I offer a definition.

Caregiver

Merriam Webster defines a caregiver as: a person who gives help and protection to someone such as a child, an old person, or someone who is sick.

If you have a specific question about caregiving, please contact me by leaving a comment through Facebook or email me: mary@marybrotherton.com.

 

 

 

 

 

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.

Know your Signs

Everyone has some stress and each person deals with it differently.

Excited

As a caregiver, it is essential that you recognize the signs indicating a need to address your stress. The sooner you recognize and accept the signs of your own stress, the sooner you can do something to resolve the issue. If you are over-stressed, your ability to provide quality care is compromised.

Cautionshallow water

Do you experience headaches after a long, frustrating day? Perhaps your tension manifests through hives or hair loss. How has your blood pressure been since you started providing care for your loved one? Are you more easily irritated than you were before? How do you sleep at night? Have you become more restless or are you dealing with disturbing dreams?

Painful

Maybe you are a pacer or the kind of person who must have a spotless house when your anxiety takes over. Has your appetite changed or are you turning to alcohol more often? Don’t mistake a lower libido or lack of energy as a need to adjust to the demands of caregiving. It’s probably stress.

strange hair

When my mother struggled to raise her children with an alcoholic spouse, she coped with her stress by charging out of the house to stand on the grass, fists raised to the sky, and she screamed. We lived in a rural area with the closest neighbors more than a half mile away and she didn’t care if they heard her. Her stress didn’t have time to make a physical manifestation. The moment she felt overwhelmed, angry or afraid, her vocalized angst with no words alerted us to tread lightly.

Privacy

I’m not as clever as my mother. I tend to stuff my worries and concerns deep inside until, like a burst water balloon, they splash all over when I keep adding more. I suffered with migraines for years until traditional Chinese medicine helped me bring my body and mind into balance. Their frequency and intensity diminished until I became my mother’s housekeeper, activities director, nutritionist and companion. illness

More pervasive, however, was how my fingers dried out. They sometimes cracked and bled, but most often, they peeled off layer after layer until my fingers were raw and felt burned.

ouch

I sought the help of many medical experts and numerous home remedies – nothing helped until I took an extended break and visited my doctor who ordered me to relax. relax in hammock

“Stop doing. Just enjoy your life. Let your husband cook and clean and let your sisters care for your mother for a while. Take some time off to do only those things that bring you pleasure.”

Oh, to be carefree again! Don’t we all wish we could just flip a switch to take us back to our childhood, where the biggest worries we had were usually brothers and mosquito bites?

Flipped SwitchBouncing

“If you don’t, this level of stress will kill you,” he said.

What? Did my doctor just tell me that my stress will kill me? How could I provide care for my mother if I am not alive? I knew the importance of caring for the care giver. I’ve written about it, but I ignored my own advice. Not this time. It can happen to me. It did happen to me!

Get Serious

When I called my sisters to tell them I needed to extend my therapy break to two weeks, I discovered my mother, who had been ambulatory the day I left, was now bed ridden in excruciating pain. Three days later, she had been taken to hospice with stage four bone cancer that had not been evident at her last imaging three weeks earlier.

Go Left

After my mother’s memorial, I returned to my doctor who expressed amazement that my hands had healed so well despite the new emotions associated with grief.  I had been so committed to providing her with the best care and an improved quality of life, I ignored the signs of stress as they appeared on my fingers.

Be CarefulNo fishingLimited

One of the primary rules of caregivers is to care for the one providing care. Don’t wait to establish a healthy routine for yourself. Set up a regular schedule for relief. Your loved one will not suffer from a few hours a week, even a few days a month, without you. Most people work five days each week and take two days off so they can revive and recuperate. They typically take a week or two off each year for vacations. Whether or not travel is included, time away from work is essential.

Caregivers deserve no less – in fact, you deserve much more for the sacrifices you are making for your family.

Take a momentLimit

It’s time to take action. Call on brothers, sisters, nieces, nephews, cousins and family friends. Before you have reached a critical stage of tension that may result in injury or illness, set up a schedule for your weekends and vacations, even if they are in the middle of the week and happen one day at a time over the course of the year. Just as important as the family finances, living will, power of attorney and medical needs for your loved one are, it is vital to be sure the caregiver takes time and makes time for breaks that take you away from the caregiving setting.

Past Calendar

Know and heed your signs. Take a few minutes to look at what has changed in your body since you started providing care and take steps to find your balance. Don’t let stress rob you of your own health and sanity.

Be kind enough to love yourself, too.

Ends

Do Over

There are many things I wish I could go back and do a different way, where providing care for my mother is concerned.

I can’t do over anything, but if I could, I would:

  • Move in sooner so I had more time with my mother.

  • Be sure I knew where all her documents were before moving in and avoid the needle-in-the-haystack searches.

  • Write a sort of contract with my whole family’s input so everyone knew our roles clearly. Know beforehand, who already had roles to play and what they were.

  • Include in that contract what I was able and willing to contribute and what I expected in return.

  • Set up a backup to the verbal respite plan. As good as it sounds when someone says, “Just call me if you need help,” and “I’m here for you,” I’d remember that words carry little weight at 4 in the morning or when busy schedules interfere with my need for time off.

  • Set up a backup to the backup so my breaks and respite care are ensured. Have an emergency backup in place before I need it.

  • Before moving in, take extra time to discover the family’s understanding of the situation. I’d include them more and make sure they included me, too.

  • Insist that all my siblings and their children take time to do a Four Generation photo sooner, rather than wishing we had.

  • Listen more.

  • Play more.

  • Dance more.

  • Sing more (even if it is off key).

  • Go more with the flow and less against the stream.

  • Clean less.

  • Communicate better.

  • Prepare for the finality of the situation. In other words, I would have a plan in place for when my job as HANC ends, rather than wondering what I should do.

I may have other areas I’d like to do over, but first, I’d like to hear from you. What would you like to do over in your life? Not just as a caregiver, but in your life in general or in your “other career,” what would you like to do differently, if given the chance?

Write me at marybrotherton@gmail.com

and let’s start a dialogue about change!

 

 

 

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.

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?

Mommasez

One of the best things about caregiving, or being a HANC—in addition to knowing you are providing much-needed Housekeeping skills, directing some new Activities, providing healthy Nutritional options and being a Companion—is having the honor of hearing stories and historical remembrances.

Even more so, are short stand-alone sentences, or what I call Mommasez.

Traveling with mom

Because I now live with my mother and spend time with her, going to doctors’ appointments, to have her hair styled, to visit family and out for meals, we talk on our way to these places. Naturally, we also talk at home.

large man in small chairMommasez things that make me shake my head in disbelief.

“When I am on my deathbed and they hook me up to whatever it is they hook people up to before they die, make sure to pour one last cup of coffee in a bag. I want to die with coffee in my veins.”

laughing woman

Mommasez things that make me laugh.

“People say ‘I’m pretty sure.’ Have you ever heard anybody say they were ugly sure?”

bowls of grapes

Often, current events spark memories from her childhood. One such memory came after I brought her a large bowl of grapes harvested from the scuppernong vine in her back yard.

“When I was a child, every fall, there was a man who would stop our bus driver and tell him, ‘Bring the children back tomorrow for grapes.’ The next day, our mothers would give us paper bags, because we didn’t have plastic in those days. Sometimes, the paper bags would have a wax lining, but not usually. So, after school, the bus would stop at his house and all the children got off and picked all the grapes we could take home. Our mothers made jelly and it didn’t cost anything. Well, they had to buy sugar and jars, but that’s how we did it in those days. We all helped one another.”

Momma says things

Mommasez things that make me wonder.

“No, I do not want to visit my cousin in the hospital. They might lock the door and never let me out.”

Mommasez things that would have shocked me years ago, but I have learned she often wants to see if I will have a witty remark.

shower

“Ooh, this shower is better than sex,” makes me reply, “Obviously you truly have lost all your memories, or you always slept with the wrong men.”

She and I both know she has had sex with a total of two men, each her husband; the second following a forty-year marriage to my father, more than twenty-five years after his death.

laughter

My goal is one belly laugh each day. Now that we’ve settled into our own rhythm, we sometimes achieve more than one good guffaw.

save the world

I have started to enjoy her simple needs without imposing my desires upon her. Relaxed in my instinct to take-over-the-reins-and-aright-the-world, I take pleasure in her happiness. I certainly share her frustrations.

parking permit

My mother is fiercely independent, even in a state of disability. Less than a decade ago, she maintained her own home and worked outside the home. Family members assisted with yard work under her supervision.

Sandberg's canes

She cooked, cleaned, handled her finances and was one of the healthiest people in the family. She recovered from her first serious fall well and managed with a cane.

Mommasez things that are profoundly sad, at times.

large family

“I can die now. I know I will never be this happy again,” she told me the night of her eightieth birthday, six years ago.

That was the first time in twelve years all eight of her children were together, most with our children and her great-grandchildren attending.

Walker

She fell again and broke much more than one bone, as in her first tumble. Still, her independent streak fights her limits. She uses a walker for every step she takes, yet there are times, she attempts chores by leaning on other things, some that are not sturdy or steady. When I offer to take over a task that seems too much for her, she scolds me.

“Let me do what I can, while I still can. Soon enough, you will have to do it all for me and you’ll wish I could do it, even if me have to fweep it twice.”

sweeper

“Fweep it twice,” is a reference to my youngest sister who longed to do anything she could to feel more grown up. When she was four years old, she started sweeping the kitchen and someone took the broom from her and told her she was too small to do a good job, as she had left some crumbs. My sister reclaimed the broom with the statement, “Me fweep it twice!”

Time is precious

Youngsters and oldsters need to feel useful and important. It’s the responsibility of those of us in the middle to help them in their quests. We, who are more experienced or healthier, may indeed do the job faster or better – but we can always sweep it twice. We must remember the important things are not the tasks we do for our loved ones, but the time we spend with them.

kitchen

Momma says she wants to be more helpful in the kitchen and I don’t mind. It’s my job to set her up for success and to enjoy the time we have together. If I’m lucky, I might even hear few more things Mommasez.

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