If you’re a caregiver, it’s important to take care of yourself, in addition to the one in your care. If you don’t, some day, someone will be taking care of you!
Definition of a word
The care of oneself without medical or professional assistance or oversight from anyone else.
Question of the month
I live hundreds of miles from my grandmother, but visit at least once a year and I’ve noticed she seems to be declining more each time I visit. I think she’s thinner and I don’t think she can take care of herself properly. Should I mention this to my parents or aunts who live closer and check on her more than I can?
You owe it to your grandmother to tell those in a position to do something. Tell your parents your concerns, but don’t say just that you are worried about Nana. Give specific reasons for your alarm and be prepared to meet resistance from them or their siblings who may not be ready to acknowledge their mother needs assistance. It’s natural to delay discussing this subject and because they see her more often than you, it’s easy to overlook her gradual decline. Make a list of exactly what you have noticed changing from year to year and have some suggestions ready for intervention, including how you can help. With your grandmother’s permission, ask the entire family to pay to hire a housekeeper who also cooks and acts as companion. Including the whole family gives everyone a sense of control and your grandmother’s condition could improve.
CareNotes.com prints helpful brochures that are offered free in hospital or hospice chapels and other healthcare facilities. Caring for Yourself when You’re Caring for Someone Ill is only six pages, but covers the subject of self-care thoroughly. CareNotes publications cover hundreds of topics and can be purchased individually or in bulk.
Properly administered self-care
How you choose to provide self-care will depend on your particular personality, needs and your support team.
- At the very least, learn to pace yourself and realize that relinquishing care to another family member or professional for a few hours is not selfish; it’s vital in the long run.
- Recognize your own strengths and accept that you may need to call on outside sources to fill in some gaps. It is a sign of strength to request help.
- Find someone you can trust when you need to talk and don’t be embarrassed to discuss your negative feelings.
- Be sure to include someone who will help you laugh.
Nurture your body with good nutrition and exercise, because if you don’t care for yourself, you cannot care for anyone else.
Feed your spirit, too. You may need to start by writing a wish list of things you want to do, events you hope to attend, places you’d like to visit when your caregiving tour comes to an end, and remember, it will come to an end.
Stress Relief Tips
Recognize your own needs before you offer to provide care for someone else. According to the staff of Kairos Support for Caregivers, caregivers fall into two categories:
- those who act out of pity and ignore their own needs
- those who act out of compassion and recognize the importance of caring for themselves as well.
Learn to recognize signs of caregiving stress and act to provide the best self-care possible.
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
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.
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
- Seek support from other caregivers. You are not alone!
- Take care of your own health so that you can be strong enough to take care of your loved one.
- Accept offers of help and suggest specific things people can do to help you.
- Learn how to communicate effectively with doctors.
- Caregiving is hard work so take respite breaks often.
- Watch out for signs of depression and don’t delay in getting professional help when you need it.
- Be open to new technologies that can help you care for your loved one.
- Organize medical information so it’s up to date and easy to find.
- Make sure legal documents are in order.
- 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.
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: firstname.lastname@example.org.
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.
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.
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.
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.
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.
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.
Just smile and remember the real reason you made the choices you did.
Everyone has some stress and each person deals with it differently.
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.
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?
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.
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.
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.
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.
“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?
“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!
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.
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.
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.
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.
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.
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.
Sing more (even if it is off key).
Go more with the flow and less against the stream.
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 email@example.com
and let’s start a dialogue about change!
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.
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.
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.
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.
Leave me your comments and let me know how your dream progresses.
HANCs – those people who call themselves housekeepers, activity directors, nutritionists and companions – may actually fantasize about the hour their roles as care givers will end.
No matter how difficult the path you are on, once your need to provide care comes to an end, know that your life will forever be changed. Many who ensure a better quality of life for others suffer long-term health problems, especially if they did not have a sufficient support team in place to help provide proper respite and long enough breaks for the care giver.
It’s not that care givers want to do everything themselves or that we are claiming our territories or that we feel no one else is capable of providing the level of care our loved ones have come to expect. We do not wish to impose on our friends and family members, despite their reminders to, “Call me if I can help.” Sometimes, arranging a break seems to cause more work than relief and when your phone rings with question after question, while you are trying to relax, it’s often easier to just cut your losses and return to handle whatever crisis caused the confusion.Time and death wait for no one. While you are planning to take a break, some day in the future, your loved one could pass away or your own health might be compromised. Don’t wait to plan your breaks tomorrow. Find the help you need, today! Stop relying on those who promise to do better and have great intentions.
Remember: most people work five days a week for eight to ten hours, then take two days to recuperate, run personal errands, relax and rest. They often get a full week’s vacation (or more) from their jobs and some receive pay for that week off. Professional care givers – whether in nursing home, assisted living facilities, or in-home providers – typically work in three shifts, each no more than eight hours each. They do not work 24 hours, seven days a week, 365 days a year – with only occasional, sporadic breaks and often no compensation. They do not sacrifice their personal lives in the same ways.
Take time for yourself. Take a break. Take more than one. If you do not take the necessary time to care for yourself, no one else will step in to volunteer, despite their best intentions. Don’t wait until it’s too late or you find yourself unable to provide care because you are in the midst of a personal crisis. Care enough for yourself to make this a priority.
It is that important.
I’ve been promoted!
The new position didn’t come with a pay increase, but it did come with a corner office.
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.
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.
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.
When I’m not at my computer or cooking or cleaning, I am with Momma, who may not appreciate being called my personal assistant.
I realized I needed to adjust my point of 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.
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.
No boundaries and no timers or schedules are good for my art, but bad for the rest of my life.
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.
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.
Although it might be nice to have the hefty salary expected with a large, naturally lighted office, who needs that kind of stress?
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.
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.
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.
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.
Once we moved in, I had to accept that I could not move the furniture – ever – because that kind of change disrupts her reality.
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!”
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.
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.
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.