Posts Tagged ‘caregiving’

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

Who can be a Caregiver?

Caregivers come from all walks of life. They may be married or single, have a large family or no children at all. They may work full time, part time or be retired. Caregivers own homes and rent. Caregivers might provide care for parents, children, spouses, siblings and friends. Some are licensed by state agencies or other entities and for some, the only license needed is love.
Acute Care: Care that is generally provided for a short period of time to treat a certain illness or condition. This type of care can include short-term hospital stays, doctor’s visits, and surgery.
 Question of the Month:
How do I deal with the lack of feelings towards me from the one I provide care for every day? I sometimes think Dad would be better off in a home, without me.
First, realize that you are not alone. Secondly educate yourself about the particular condition that has caused the apathy. Does he have Alzheimer’s or other dementia? Has he been through a stroke or is he suffering from Parkinson’s Disease or something else? There is strength in knowledge. Reach out to other caregivers, online or in your community. Be honest with yourself. If you feel angry or frustrated, don’t take it out on your father, but express your emotions to others.
 This month’s Hot Topic – Advance Directives

old desk

Before the coulda, woulda, shoulda sets in, families need to have honest discussions about Advance Directives, those documents necessary to be sure life is lived according to individual wishes. Before it’s too late, talk about what you want to happen in case of an emergency.
Emergencies can happen at any age and to anyone. If you don’t have a family to support you through the end of life, you can appoint someone as your guardian, or the court might.
If you do not want to be revived after a heart attack, a tragic accident or other debilitation, you will want to be sure you have a Do Not Resuscitate order in place.
A Living Will spells out exactly what you do and do not want toward the end of your life. Ice cream for breakfast every day? Make it so! Feeding tube to prolong life? Make it happen. Love to eat and think a feeding tube is unnatural? Spell it out in your Living Will.
If you designate a Healthcare Proxy now, that person will make medical decisions for you – based on your conversations – in the event that you cannot speak for yourself.
A Durable Power of Attorney allows your designated person to make both financial and healthcare decisions on your behalf.
Talking about these issues will not create a need, but it will create peace of mind. Be sure everyone who may need to know your wishes, does know. Do not assume everyone will tell the others in your circle of family and friends.
Keep a copy of your Advance Directives in a folder, near you or in a designated location for first responders and other medical personnel.

 

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.

 

 

 

 

 

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

A Corner Office for a HANC

I’ve been promoted!

The new position didn’t come with a pay increase, but it did come with a corner office.

Office in the corner

Each morning, if I get to work early enough, I can sit at my desk and watch the sunrise. Since it’s on the ground floor, I’m able to observe birds in nearby trees, which can be a momentary respite for my eyes.

Small bird

            My new office also comes with surround sound, a fully stocked refrigerator and a snack drawer with all my favorite munchie-crunchies. Finally, I have a personal assistant who reminds me when it is time to eat or take stretch breaks. Perhaps one of the best perks of the job is how much freedom I have to be with family and the out-of-office scenic tours I’m expected to conduct.

bridge over untroubled water

            The truth is, nothing has changed but my perspective. I’ve been using my mother’s fifty-year-old kitchen table as a desk since I moved in with her. It’s still a kitchen table.

table

When I’m not at my computer or cooking or cleaning, I am with Momma, who may not appreciate being called my personal assistant.

Appointment checks

I realized I needed to adjust my point of view.

Sidewalk view

Rather than seeing her as a frail, elder demanding attention through pleas for constant snacks or drives to nowhere, I now see her as my private helper and partner in our grand adventure.

Road in Santee

            Whether I am blogging, editing, posting photos, writing or just goofing around with social media, it’s easy to lose track of time on the computer if someone does not distract me. When I go for walks, especially if I take my camera, I become lost in my own world. I tune everything else out.

Holding a camera

No boundaries and no timers or schedules are good for my art, but bad for the rest of my life.

Calendar

            My new outlook keeps me attuned to the truly important things – my relationships and my Self. My physical, emotional and spiritual self, with a capital S, deserves my focus. Rather than seeing my life through the dutiful eyes of a daughter who has given up much to provide support for a loved one, I now see myself as an executive HANC, with a side job that occasionally takes me away from fun excursions with Momma.

Female executive

            As her health and stamina slowly return to her, we’ve all noticed her personality is also making a comeback. Her wit and humor, long subdued by malnourishment, pain and dulled by medications, entertain anyone willing to spend enough time interacting with her.

Relationships

            Although it might be nice to have the hefty salary expected with a large, naturally lighted office, who needs that kind of stress?

Office building

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

Caregiver Dreams

I never dreamt I would become a caregiver and spend my life as a housekeeper, activities director, nutritionist and companion to my aging mother. Not one of my daydreams involved the minutiae of being a HANC.

Daydreams of Night

Like life lessons, some dreams recur until we learn from them. Others don’t need repetition to impress us. Dreams are powerful messengers that can take years to unravel.

When I was a child, I had a dream so frightening that I woke, as many children do, screaming and shaking.

Recurring dreams

My fairy-friends rested on my fingers and granted my requests until the day I sent them away with insults. Soon after, an enormous frog sat on me; only my hands, feet and head weren’t covered. I was terrified of frogs and thought I was going to die underneath this one. I called out to my fairies who reminded me that I’d said I no longer needed them in my life. I begged and pleaded, but they were adamant. They would do nothing for me. Once I apologized and promised to be a good girl, the frog vanished and I was free.

Pewter Fairy

In 2002, I learned about a television series that dealt with dream interpretation, so I contacted the producer to see if he was interested in the dream that had remained a vivid memory for more than thirty years.

Film Crew

The Dream Team didn’t last long as a show on the Sci-Fi channel, but the interpreter’s thoughts about my nightmare linger.

Terrible dream

The interpreter asked about my occupation and when I said I was a writer and editor, he told me I was in the wrong field. The dream – to him – clearly indicated that I should be in a healing profession such as nursing or massage therapy, since my hands played a vital role in the dream.

hand on tree

The frog indicated a potential for change or the unexpected.

Tree frog

He suggested that the fairies represented my relationships with others and with my spiritual self. He then encouraged me to do some soul-searching to determine if I should pursue a medical career.

fairy

I did not wish to change careers.

The interpreter said he thought that since I had remembered a dream I’d had three decades earlier, this was itself, a powerful omen. He urged me to put serious thought into what the dream foretold.

Blue dreams

I dismissed the encounter as a fanciful lark. My telephone interview didn’t air before the show cancelled and I continued as a writer/editor.

Pages of edited work

A few years later, a friend suggested I join her at a local paint-your-own-pottery studio for an afternoon of creative exploration. When I saw the fairy riding on the back of a frog, I knew it was the only piece for me. It was as if the dream, rather than recurring night after night, manifested itself to me every ten years or so.

Frog and Fairy

Some days, when things aren’t going as well as I’d like, I wonder if I knew, when I was in grade school, that one day I would be a caregiver to my mother. It doesn’t matter what I knew as a child or whether my dream was prescient. All that matters today is that I am able to make a difference in the quality of her life.

Halcyon

Prepare Thyself!

Theodore “Teddy” Roosevelt, 26th president of the United States of America, conservationist and creator of the National Park System, advised, “Make preparation in advance. You never have trouble if you are prepared for it.”

National Park System

EDC, Every Day Carry, refers to “small items or gadgets worn, carried, or made available in pockets, holsters, or bags on a daily basis to manage common tasks or for use in unexpected situations or emergencies. In a broader sense, it is a lifestyle, discipline, or philosophy of preparedness.”

Handy when needed

Long before I became a HANC (Housekeeper, Activities director, Nutritionist and Companion) for my mother, I knew the value of being prepared and the adage promoting “A place for everything and everything in its place.”Yellow leather bag

I am still working on the place issue and have abandoned a few ideals along the way. I’m learning how insignificant some of my personal quirks and preferences are.

It does not matter if the cups and glasses end up on the same shelf. If the teaspoons and tablespoons end up where I wanted the forks, who cares? Towels dry just as well from the third shelf as they would if they were placed on the second.

martini on a shelf

My mother often repeats a story she heard as a child whenever she wants to commend me on my preparedness.

Betsy often went with her sister who was a midwife. One time, the midwife was delivering a baby and discovered she had left her scissors at home. Betsy, who was not a midwife, pulled a pair of scissors from her basket and said, “Betsy’s ready. Betsy’s got her scissors.”

Metal Scissors

I might seem as if I am organized and know where everything is, but some days I don’t feel as if any amount of planning or preparedness training will equip me.

Everything in its place

            I haven’t been prepared to hear some of the things my mother has said to friends on the phone.

  • Oh, I never go anywhere.

I make a point to take her as often as she is willing to go to places she needs to go – stylist, doctors, church, family – and places she might find interesting such as museums, farmers’ markets or just driving to see landscape and homes.

traffic

 

  • I can’t go see her and she won’t come to me.

Now, I feel like a warden in a prison. I’ve recited names of family and friends I’d like to visit with her and she tells me she does not want to go see them, can’t make the ride that far, won’t be able to climb the steps into the home or they should come to her.

prison

 

  • Don’t get me wrong. I enjoy having them here, but . . .
  • I don’t do anything. Every day is the same. I just sit in my chair and do my puzzles.

I have scheduled my editing work around my mother’s day. I usually work long after she has gone to bed.

 

puzzle books

What’s a HANC to do?

Take a deep breath and realize that whatever happens between girlfriends on a phone call – even old girlfriends – is between girlfriends and shouldn’t be taken personally. Often, these calls, especially among the elders, are just for passing time together.

lifetime friends

Try to find reasons for those drives. Need milk? Bread?  Cookies?

C is for cookie

Do you have something to return to a sibling or friend? Turn simple errands into expeditions by taking a new route and look for streets with slow speed limits so you can take in the sights or discuss your surroundings.

Keep asking. Eventually, you’ll hear

Ear

“That sounds like a good idea.”

Make memories that might stick for future phone calls and perhaps one day, you’ll overhear:

            I’m not sure when, but she took me to the museum and we saw things that reminded me of my childhood. … One day, we went out to some parking lot and just gazed up at the clouds, just like I used to do with my cousin, but we stayed in the car instead of lying on Momma’s porch. … We went to the church festival and it was nice to see all the people there; I didn’t know so many of them missed me. … We do so many things together; she and I bake cakes and cookies and we go shopping together!

clouds above mountains

You might not hear these things, but it won’t hurt to make the memories for yourself – just in case.

            Take the steps necessary to prepare yourself for what awaits. Study, read, research and talk with other HANCs. Get ready for the good days and the bad and know there will always – and I mean always – be something you didn’t expect.

stairs

By all means plan and prepare. Just know when you become a HANC, you cannot plan for every contingency. Do your best and accept that your best is just right.tall flag at mountain

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!

Follow Us