Posts Tagged ‘support’

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

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!

 

 

 

Caregivers, Check your Goals

  My husband asked a simple question. “Are you still writing?”

            “Of course I am. Why would you ask?”

            “Because, I care.”

He knows how important my writing is to me and we haven’t discussed my work lately.

Journal words

  It seems the only things we discussed for so long related to my mother.

            My husband and I talked about my mother’s health, her eating habits, her attitudes. We chatted about family matters involving who had and had not visited, who interacted with Momma on Facebook and where she and I went on our frequent drives. He teased that I should have worn a hat similar to the one Morgan Freeman wore in the movie, Driving Miss Daisy.

Horses behind fence

            He worries that I may have lost sight of my writing goals. Like many things, caregivers need to reassess their dreams and goals, because we ought not let life interrupt or interfere with our plans. My writing hinged, somewhat, on my mother’s situation, but my husband is correct. I didn’t focus myself around my writing – not enough, at least.

            I still write short articles for the publication that was once my daily job. I write for my website and this blog, though I don’t keep myself to as strict a schedule for updates as I’d like. My freelance editing gigs keep me busy in spurts, but not so busy that I can’t block out personal writing time most days. Managing my mother’s Facebook page did consume a small amount of time, but it brought her too much pleasure for me to ignore.

            I know I need to refocus myself and reestablish my writing to-do list. It’s what I love most in life, after my family and friends. Having my words published in my lifetime is vital to me. However, your goals and dreams may be different.

Every HANC has had goals, dreams, personal ambitions and hopes put on hold. Some have allowed their visions to fade away. Perhaps the most unfair part of providing care for our loved ones is when we allow ourselves to become the white noise of our own lives.

Heron at Lake

We know we’re there, but we don’t really listen to our inner voices any more. Even after the care giving stops, there is a certain re-adjustment period that is necessary for us to function, again. Our lives have been interrupted and now, we have to find a way to plunge back into them.

            I challenge you to join me in reclaiming your dreams.

What goals have you been ignoring?

What do you want to do with your life, once it is wholly yours again?

What can you do today to work toward your dreams?

Who can help with your quest?

            Start by making a list of all the things you hope to do, one day. Then research what steps you need to take toward fulfilling those goals. You can never achieve a dream or accomplish a goal if you don’t take that first step.

Be serious or be frivolous, but be honest.

Honest Abe

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

marybrotherton@gmail.com

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?

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!

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