Caregiving is willingly undertaken out of love and devotion to the person with ALS and can be a source of great personal satisfaction. Yet, over time, caregiving exacts an enormous emotional toll, and can adversely affect the caregiver’s physical and psychological health, threatening their ability to continue providing care. Concern for the person with ALS often causes the caregiver to overlook her/his own needs such as eating properly, getting enough rest, or taking time to pursue one’s own interests.
Primarily, caregiving is provided by family members. Family caregivers provide care day and night, over weekends and on demand. Caregiving can include personal care, assistance with mobility in the home, transportation, housework, and grocery shopping, along with looking after other family members’ needs. Caregivers are often employed outside the home and may be the primary source of household income which adds even more demands, responsibilities and stress. The family caregiver spouse, partner, adult child, parent, brother, sister — needs acknowledgement and support in the process of starting and maintaining the care-providing relationship.
- Nearly 53 million people in the United States provide care to a chronically ill, disabled, or aging family member or friend during any given year.
- Caregivers spend an average of 24 hours per week providing care for their loved one.
- 61% of all caregivers in the United States are female, and the average age of a caregiver is 49.
- 51% of caregivers feel their role has given them a sense of purpose or meaning.
- One in 5 caregivers report high financial strain as a result of caregiving (18 percent). Four in 10 have experienced at least one financial impact as a result of their caregiving (45 percent).
All data, unless otherwise cited, is from the National Alliance for Caregiving and AARP’s 2020 Caregiving in the US Survey.
For additional information and resources, visit caregiveraction.org.
November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone living with ALS has a broad and lasting impact, in both daily life and long-term well-being. Download this infographic about caregiving and share it on your social platforms to support a caregiver you know.
The ALS Association Care Connection
The impact of an ALS diagnosis is profound. It’s not uncommon for daily tasks, such as meals, laundry, and children’s activities, to be less of a priority when providing care for a loved one with the disease. Caregivers may feel defeated by the growing list of tasks they are no longer able to manage.
It’s often hard to know when and how to ask friends and neighbors for help. And for those who want to offer a helping hand, it’s difficult to know just what is needed and how to make a difference.
Now, when someone asks what they can do to help, the answer is "give me your name and email address so I can provide access to our ALS Care Connection page." ALS Care Connection is a private online calendar that can be used to support to the entire family by organizing volunteers to take care of some of those tasks families describe as "falling through the cracks."
The ALS Care Connection is a simple online tool that helps organize the community of people who want to help. It coordinates their efforts to more efficiently support families living with ALS. To learn more about this tool and its features, review our step-by-step guide to getting started.
View the recent Care Connection webinar below:
Caregiving Tips and Hints
- Take Care of Yourself
Caregivers often do not get adequate personal time. It is important to take care of yourself both physically and emotionally. Taking time for yourself is not selfish and will improve your capacity to care for your loved one. Make your needs known and create time to do the things that are important to you personally. Continue relationships and activities that are important to you.
- Ask for Help
Caregivers may not ask for the help they need to provide care for their loved one and to take care of themselves. Have a "wish list" available when people ask what they can do to help you. Most people want to help, but do not know what to do. Accept help when it is offered. Recognize the limits of your own endurance and strength and help your loved one accept care from others. A good resource for building a circle of help and care is http://www.sharethecare.org/.
- Be Aware of Depression
Depression can strike anyone and caregivers are especially vulnerable - it is the most common healthcare condition reported by family caregivers. Be aware of the early signs of depression and see your healthcare professional if you think you are becoming depressed. You do not have to live with depression.
- Value Yourself
Caregivers do amazing work in caring for their loved ones. Recognize the important and good job you are doing and realize how valuable you are. Caregiving is a never-ending job and perfection is an unrealistic goal. Do not allow the normal feelings of guilt and anger keep you from seeing the value of your daily caregiving.
- Manage Your Stress
Caregivers can strengthen their coping and stress management skills by communicating their feelings and needs, setting limits and making decisions to do things for themselves. Identify one or two people with whom you can speak freely about your needs and feelings. Professional counseling can be very beneficial for caregivers who are trying to not lose their own sense of self in the role as caregiver. It is appropriate to set limits and expectations with your loved one, family and friends. Physical exercise, creative activities, humor and social/family events are effective strategies for countering caregiver stress.
- Educate Yourself
Knowledge is empowering. Get as much information about ALS and caregiving as you can. The more you know, the better prepared you will be in proving care and support. Ask friends and relatives to help gather information and resources. Become an advocate for your loved one and for yourself.
- Know You Are More Than a Caregiver
In becoming a caregiver, some people experience a loss of the roles and relationships they had with their loved one before the illness. It is easy to see yourself as more a caregiver than wife/husband/parent or child. Identify ways to keep your personal and family roles and relationships alive. Talk about family events and news about children and grandchildren. Look at family photos together. Change the daily routines periodically like adding candles to the dinner table or putting on your favorite music. Making the effort to retain the relationship you have had with your loved one - aside from your role as caregiver will help you in coping with the multitude of changes family caregiving poses.
- Talk to Other Caregivers
Caregivers who share resources and their own personal experiences report less stress and fewer problems. Establish networks and support systems with other caregivers to share solutions to common problems and to talk with people who can understand first-hand what you are experiencing. Many of our chapters run caregiver support groups. You can also talk to other caregivers via online forums such as www.caregiveraction.org and www.caregiver.com.
- Utilize Assistance Programs
Take advantage of local, state and federal programs that support and assist caregivers.
- Some states and local agencies provide financial support in the form of vouchers or cash for services and equipment.
- Military veterans with ALS may be eligible for Aide and attendance allowance.
- Many state and community agencies and non-profit organizations - such as The ALS Association and religious groups - offer respite services. Contact us to find out about respite programs.
- Some states offer tax credits and deductions for family caregivers.
- Employed caregivers may want to apply for unpaid Family and Medical Leave under the Federal program.
- A list of agencies can be found here: https://www.caregiveraction.org/resources/agencies-and-organizations
Common Causes of Burnout
A perfectionist continually focuses on what needs to be improved, rather than what has been accomplished. When this becomes our focus, we may never feel that we have succeeded at anything.
Never-ending tasks describe work that appears to lack both a beginning and end. This can lead us to feel as if we have no closure, and therefore have not completed anything.
Work overload is when we have more work to do than we can complete in a given amount of time. When we operate this way, we set ourselves up for failure.
Impossible tasks suggest that we are physically unable to do something we may feel we should be able to do. If we believe that we should be able to do something that we cannot do, we automatically feel like we have failed. It is a no-win situation.
Many of us play a number of important roles in our lives, such as wife/husband, mother/father, caregiver, and breadwinner. It is easy to feel overwhelmed when we are trying to play multiple roles in our lives.
Self-sacrifice occurs when we agree to take on certain tasks despite our true desire to complete them. When we continually agree to things that we would rather not do, we inevitably become resentful.
Any emotion that is unexpressed creates "blocks" in our ability to complete tasks and to function in relationships. If we do not speak about how we are truly feeling in a situation, those emotions surface in other, unproductive ways such as being chronically late, frequently forgetting things, or reacting in ways that are inappropriate to the situation.
Common Symptoms of Burnout
It is important to remember that we are not alone in our experiences with burnout. At some point in time, it is likely that most of us will experience one or more of the following symptoms:
"Negative" emotions are the feelings that are often the least comfortable to feel. One symptom of burnout is consistent "negative" feelings such as anger, anxiety, dissatisfaction and guilt.
We might experience conflict with others in the form of emotional outbursts, overreacting, hostility and withdrawal.
Some common health problems associated with burnout are frequent insomnia, fatigue, headaches, backaches, lethargy and high blood pressure.
We may become less productive due to boredom, lack of enthusiasm, feelings of fear or an inability to concentrate.
Another symptom of burnout is a marked increase in the consumption of alcohol and/or other drugs, cigarette smoking, caffeine and food.
We might be inclined to work more hours due to feelings of inadequacy, believing that the more we work, the better we will feel.
Depression is the suppression of emotions. We may be depressed if we notice an overall feeling of hopelessness and meaninglessness.
Loss of self-esteem:
Simply stated, the loss of self-esteem equals a decrease in self-confidence.
Solutions in Dealing with Burnout
Once we become more aware of why we experience burnout, and the various ways burnout manifests itself, we can begin to focus on ways to guard against it. It is time to develop a plan of action!
Take care of yourself:
- Regularly feed your body nutritious foods.
- Get sufficient rest.
- Exercise routinely.
- Pay attention to your body's signals of stress.
Practice stress-reducing strategies:
- Breathing exercises
- Progressive relaxation techniques
- Tai chi
Develop a strong support system:
- Surround yourself with friends/family by whom you feel supported.
- Attend a support group where you can share your concerns & feelings.
- Create a support /discussion group at work where you can share your concerns, while being willing to talk about your part in the problem and the solution.
- Utilize your company's Employee Assistance Program (EAP) to receive support/counseling or referrals for services that can assist you.
- See a counselor or therapist if you are in need of more extensive mental health support.
Create a fulfilling life:
- Make conscious decisions about how you want to spend your time.
- Say "yes" to what you want to say "yes" to, and say "no" to what you want to say "no" to.
- Acknowledge your priorities and actively build your life around them.
The key to avoiding burnout is to continually seek balance in our lives. The more informed we are about our own issues with burnout, the better armed we will be to take care of ourselves. Consequently, the better job we do of taking care of our own needs, the more we can be physically, mentally, and emotionally available to those around us.
From One Caregiver to Another
Barbara Dickinson, whose husband, Brian, lived with ALS for nine years, shared her thoughts and feelings about having a loved one with ALS. Barbara is a former national trustee of The ALS Association and a trustee of The ALS Association's Rhode Island Chapter. Our thanks and gratitude go to Barbara for agreeing to let us put her words on our web site.
The ALS Association's goal in sharing this information here is, through Barbara's story to 1) show how one family was able to successfully negotiate with their HMO for in-home care payments, and 2) share experiences of caregiving and effective coping strategies - validation of common feelings.
It should be emphasized that this tells the experiences of one individual at a certain time in her life. Certainly, not all people will have the same situations and experiences that Barbara shares and not everyone will and/or would develop the same opinions that Barbara has.
Excerpts from Barbara Dickinson's messages:
"My name is Barbara Dickinson. I'm the trustee of the Rhode Island Chapter of The ALS Association and also a national trustee of The ALS Association. I got involved with ALS because my husband was diagnosed nine years ago with the disease. We made some decisions in the course of his disease that has allowed him to have a quality of life that I would hope more patients with ALS would be able to achieve, and that's what I want to talk to you about today.
"I think there are really three things that get wound up into one. The first is that being a caregiver for a disease like ALS is completely and totally exhausting, both physically and emotionally.
"The next challenge is that caring for someone with ALS is financially extremely draining.
"And third is when you begin to realize that you've got to get some help. Help is extremely expensive. HMOs and other insurance companies believe that family members can care for victims of ALS in their home without any help, outside help. But I can tell you that it can't be done for any long period of time."
On getting assistance with care:
"The HMO told us that we would not be allowed to take my husband home, that he would have to go into an institution, a critical care nursing home. And we sat down, all of us in a family conference, and also with my husband's doctor, and just decided that this was unacceptable and that we were going to do what we could to bring him home and to continue to care for him in our house. But we understood, because someone who is on a respirator needs 24-hour constant care, that we would have to have help.
"We decided to challenge the HMO, and we did this by hiring an attorney who was a specialist in medical insurance. The attorney, in reading the insurance policy fine print, found a clause that said that the insurance policy had to provide comparable care, that they could not downgrade my husband, or any of their patients, from one level of care to another. And what that meant was that they would have to provide something that was the same as or equal to a nursing home.
"So what we asked for was for them to give to us the amount of money they would have paid a nursing home to care for my husband and allow us to hire private care to care for him at home.
"Well, we did have a series of sometimes acrimonious meetings with the insurance company. We just kept pleading our case. We were lucky in that my husband was fully employed, and it was to his benefit that he continued to work, which he would not have been able to do in a nursing home. But we also used the power of the press, and we said we would present a very unflattering picture of how the HMO was responding. I pointed out to the HMO that when a person buys life insurance the buyer is gambling that they will get sick, and that the insurance company is gambling that you won't get sick. And in our case the insurance company lost and then they had to pay their debt. And they lost the gamble, so pay up.
"Well, the result was that my husband lived at home for the last six-and-a-half years. He continued to be fully employed. He's continued to write his column, less and less in the last few months as his illness has progressed, but for about five years he entered a wonderful plateau. It's not a place where anyone would really like to be since he couldn't talk, couldn't eat, couldn't breathe, couldn't move anything except his eyes and his mouth enough to smile. But he did see children married. He did see two grandchildren born. And we continued to have him as a part of our family life during all that time, and that was very important to all of us.
"The ALS Association has an annual advocacy day in which numbers of chapters go to Capitol Hill to talk to senators and representatives about the disease. Local people can contact their congressmen and congresswomen and ask them to become aware of how difficult it is for families who are facing devastating diseases to get the kind of in-home care they need.
"Don't neglect the power of your local media if you want to make a case for what you should be able to have. Go to the television station. Go to the newspaper. Go to talk radio and talk about what your needs are, why they are important and what you think the good help would be for you.
"Join with other people in your situation to form advocacy groups who will figure out ways to put the pressure on local institutions who might be able to provide some kind of help. Your local chapter of The ALS Association or the national ALS Association may be able to help you with advocacy efforts.
"When you talk to an insurance company, always go to the highest official you can reach with your problems. They're not as likely to say "no" automatically. And above all, don't give up."
On the impact of ALS on the spouse/caregiver:
"I can't remember that anything has ever frightened me more than the prospect of living with this disease. I think my first reaction, and I know my husband's, was just cold fear. It would wake me up in the night. It would be the first thing I would think of in the morning. I had no idea what we were going to do, how we were going to handle it. And with that fear was a grief so terrible that I used to have to stop my car by the side of the road on the way home from work so that I could cry and then try to keep on going.
"Well, I realized that I was also very angry. What made me realize I was angry was that I began to drive like a maniac. I couldn't stand to have anybody in the passing lane who wasn't going as fast as I thought he or she should be. I couldn't stand for anyone to do something stupid. I had no tolerance or patience for anything that was going on. I was also terribly worried about how I was going to handle this, where the money was going to come from, how we were going to get through it as a family, what the future was going to hold, and how would we handle each new day as it came up. And there were terrific feelings of isolation. I stopped being who I thought I had been, and I became this other person, this caregiver. I was no longer really a wife. I was no longer really a mother. I just had this other identity where I was taking care of someone who was getting worse and worse every day.
"As far as physical ailments go, I had backaches, I had a lot of tension, which resulted in headaches and a lot of other muscle aches. My blood pressure went up. I lost quite a bit of weight in the beginning. And my boys, who were now working at least as hard as I was physically, had back problems and muscle aches.
"I dreamed regularly that I had ALS. I still do, although maybe a little less frequently. I would be trying to walk somewhere, and I couldn't lift my legs. I would be trying to climb a flight of stairs, and I'd have to reach down with my hands and lift one leg after the other to go up a flight of stairs. I couldn't run in my dreams. And I would wake up from these dreams because somewhere in the last minutes of the dream I would think, "but we can't both have ALS." So I'd wake up in the dream, thinking, "Thank God it was only a dream," but on the other hand, that's what he's got. This is what he's going through."
"And I also used to dream, and I still do once in awhile, that I had this huge mess to clear up. I had a lot of things I had to pack. They all had to be put in boxes or suitcases, and I had to get this all done so that I could catch some kind of transportation, a train or a plane or something, and I could never get it done on time. No matter how hard I cleaned or how fast I tried to control it, the mess just spread and spread and got bigger and bigger. So inevitably I missed whatever form of transportation it was.
"Well, on the advice of our wonderful family physician, I saw a psychiatrist and went into counseling with the psychiatrist, and so did my husband and my children. Finally I took some antidepressants, which made a big difference to me because they allowed me to sort out my concerns and prioritize what was important and what wasn't important.
"I also had wonderful advice from a dear friend, who said two things to me. He said, first of all, you're going to find out who your real friends are. People that you think you could count on are going to disappear, and other people are going to come from nowhere and help you out with this. And then he said, lots and lots of people are going to be taking care of your husband but nobody is going to be taking care of you. So you're going to have to find out a way to take care of yourself.
"And I began to do something I'd never done before in my life, which is to go have my nails done every week, which was an opportunity to get in a kind of girly environment and let somebody do something for me, and it was an hour and it wasn't very expensive. So it was something I could fit in. And it did help.
"In the beginning, I absolutely hated what this disease did to our lives. I hated every modification that we had to make. I hated having ramps for wheelchairs. I hated having handicapped lifts in bathrooms. I hated having equipment all over the house. I hated that the kitchen became a pharmacy because I began to feel I was losing the only haven I had, which was my house. But now, I don't know what it would be like to have a house that was not a hospital. One of our rooms is a hospital room now with a hospital bed. There are ramps all over the house. There is equipment everywhere. We're used to it now. The difficulty is there's no privacy. I don't have anywhere to go in my house now to be just sort of a normal person. I can't come downstairs in a slip to get a glass of orange juice or any of those things that people normally do in their own houses because I'm never alone in my house. In fact, there can be ten or twelve people in and out of the house in a week, bringing in supplies and doing various things that need to be done. So it's made me retreat to a certain extent into my bedroom as a sanctuary.
"Of course, I'd really like to find a cure, or at the very least a management for ALS. And I'd like to see that insurance providers would come to recognize the burdens that they impose on caregivers, not just for people with ALS but for people with Alzheimer's, for people with cerebral palsy, for people with all the other diseases for which 24-hour care is essential to the well-being of the patient. I'd like them to realize what kind of burdens their policies place on caregivers and on the patient, and I'd like to see them address how they can become more humane and more caring.
"Lobby your representatives and your senators and try to get them to understand that we have to change the healthcare system in this country and that the healthcare insurers have to change their policies so it becomes a better place to live in America when you're coping with an illness."
Respite care is one tool you can use to help yourself avoid caregiver burnout. To begin taking advantage of the benefits of receiving a reprieve from the routine care you provide to your loved one, follow the three steps below:
Step 1 - Are you a family caregiver?
The first step to receiving help is to identify whether or not you are a family caregiver. Not everyone considers the care they provide to their loved one as 'caregiving.' However, you are indeed a family caregiver if you provide care to an ill family member such as assisting with areas of personal care, emotional support and companionship, finances, and maintaining the household.
Step 2 - Have you discussed your needs with your loved one?
It is important to communicate your needs and desires with your loved one, the person you are providing care for. If you believe that you might like to pursue respite care services, it is essential to discuss this with your loved one. In doing so, you may discover that your loved one is very supportive of the idea. You may also find that having such a conversation opens up doors for even more communication and intimacy.
Step 3 - How do you find out about respite services available to you?
Respite care can take different forms. In-home respite care usually involves a trained professional (often from a home health agency) who comes into the home to provide necessary care during a period of time when the caregiver is away. In some communities, there may be a church, volunteer agency or group that provides respite care by a volunteer. (The level of training the care provider should have will depend on the level of care needed by your loved one.)
Another way to partake in respite care services is through a facility or residence that employs trained health care staff on-site. This type of respite would allow your loved one to stay at such a residence on a short-term basis (as determined by you and your loved one) and entitle him or her to receive whatever cares he or she needs. This kind of service may be available through a local long term care residence, hospital or assisted living facility.
A less formal way of way of receiving respite care assistance is by utilizing family and friends who are eager to be helpful. The next time a friend or family member asks you how they can help, consider responding by telling them that giving you a break for the day or an evening, or even for a few hours might be the nicest gift they can give you.
"We are most effective as caregivers when we are centered in our own sense of well-being."
- Caryn Summers, R.N.
The National Respite Locator Service is a national directory of respite services that helps caregivers find a respite program in their area. Respite care programs provide complete patient care, either in a hospital or home setting, and are designed to give family members a break from care-giving duties. They specialize in helping children.