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.
You 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.
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.
Knowing 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 email@example.com
November is National Family Caregivers Month, and rightfully so, with more than 65 million family caregivers in the United States, alone. Family caregivers are full-time partners with their loved ones, and because of the complexities involved in providing care at home, entire families are affected. This is a great time for caregivers and their families to express gratitude, not just to the caregiver, but to the one being cared for, as well.
If you want to express gratitude to the caregiver in your family’s life, here are some ideas:
- Give tickets to an upcoming local event and offer to stay with your loved one while the caregiver takes a friend or other relative.
- Consider a magazine subscription in a hobby of his or her choice and be sure the subscription can be read online, if the caregiver prefers to read e-books.
- Home-cooked meals are almost always welcomed by caregivers.
- Offer to simply come and keep the two of them company for a few hours. Pull out the old hard copies of photos and reminisce together.
- Bring casseroles for the freezer in microwave or oven-safe dishes for “bad days.”
- Stop by with a picnic lunch or tea party in the middle of the day. Be sure you call first to avoid doctor’s appointments and arrive early enough to set it up in time for lunch. Make sure you do all the post-party clean up, too.
- Have flowers delivered.
- Stop by for a visit with no expectations. See what unfolds.
- Give the gift of an afternoon off, with a gift certificate for a pedicure or movie.
- Plan an evening to relieve the caregiver, but bring a designated driver so the caregiver can go out for a few drinks without worries.
- Ask your siblings or friends to bring potluck and photos for an evening of nostalgia. Be sure you stay to clean up afterwards.
- Offer to visit while the caregiver tends to personal needs like doctor’s or hair appointments.
- Pay for a haircut.
- When you are doing your weekly shopping, buy some special foods you know your family will enjoy. Add in some paper products so the clean up is easy and stop by with a “Care Package.”
Thanksgiving Dinner should be a time for family unity and a chance to share gratitude, spend time with loved ones, but for the family caregiver it is often just one more thing to manage. As our families age and adult children relocate, our traditions change with our needs. If you are the caregiver for your aging parent(s) you may be expected to resume or resurrect old traditions. You may need to compromise. If your siblings have created new traditions, discuss ways you can include your parents so the burden of a full-blown Thanksgiving celebration doesn’t fall entirely on you. Consider if it may be time to create a new tradition and remember not doing things the way they’ve always been done is not a tragedy. It can be the beginning of something better.
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!