Support for Caregivers

When a person gets MS everyone is aware of the emotional and physical adjustments that he/she has to make. However, any type of chronic illness affects not only those who have the condition but also those who care about them. It affects their significant other (whether married or in an exclusive dating relationship), their children (whether still small or grown with families of their own), their parents and siblings; their friends; the people with whom they work; everyone around them to some degree. Of course, how and how much depends on the relationship, but there is an effect nonetheless. Turmoil at work I can speak to many of those situations. I help managers identify ways to help provide reasonable accommodations that would allow employees with chronic conditions to be able to do their jobs. Often times, it requires managers and coworkers look at how to accomplish a goal from a different perspective. I also try to help the employee know their rights under the Family Medical Leave Act because people with chronic health conditions often need to miss time from work. This is true also for their immediate family members who might have to assist them with transportation or care. Missing time or coming in late to work can lead to feelings of guilt or fear of job repercussions if it happens frequently and FMLA no longer applies. As the family member, especially if you are the spouse and your partner is disabled, a job is your lifeline to having a place to live, food to eat, and medical care; so, creating any type of turmoil at work is very scary. Effect on extended family and friends Then, there is the effect on extended family and friends. All plans for special occasions are contingent upon how the family member with MS is doing. For me, I never go out with friends. I never plan a day of shopping. I never get to go to performances at church or attend family reunions or go out with the gang after work. I have a combination of family, friends, and hired assistants to help Lynn while I work. I can make a trip to the grocery store and back as long as I’m not gone more than an hour or slightly longer. As far as participating in anything extra...forget it... I’ve already called in my markers or I need to reserve them for the super important times I need to get away. So, except what I glean from Facebook or emails, I have no friendships. For family gatherings, if they want us there, the events have to be held at our house. I’m very fortunate that all or family understands that and routinely plans special events at our home so that both of us can attend. Lynn needs a place to rest from the activities, and I need to be close by to help him get into bed, feed him, and cath him as he needs it. Impact on older children For children, the impact is closer still. Not only do they grieve over the things their parent can no longer do with them (Lynn had to miss his son’s graduation from Graduate School, for example), but they feel guilty often for still wanting to participate in the things their parent no longer can. Lynn’s son is very caring and is really wonderful for helping out and keeping in touch but I know he struggles with balancing what he wants to do and feels he needs to do (though he has never said anything), I’m sure there are times he resents us “expecting” him to help me out at events. I know he probably wants to have “just one” family gathering where he’s not called upon to help care for Lynn while I help out with the other activities occurring. Those feelings are natural but often lead to feelings of guilt. Then there is also the fear of, “Will I get MS, too?” Knowing the symptoms and learning what may help preventive MS becomes a way of life. There is also that question when they start dating, “do I get married and have kids of my own if I’m likely to have MS or pass it on?” It’s a struggle for them to make the decision to share the possibility with someone they care about and will that person be willing to take on the risk of possibly having a totally disabled spouse, if that should be the outcome? Children have many, many fears, anxious moments, and adjustments to make related to coping with their parent’s MS. The curiosity and expectations of smaller children I’ve spoken to the impact on adult children, but it also effects small children as well. Our three year old grandson visits often. He brings things to Lynn to fix or asks papa to play and papa can’t; so, he’s having to learn what papa can do and can’t. He’s curious about papa’s chair and wants to handle the controls (not a good thing) and why is grandma feeding papa? I’m sure as he grows up, he will have adapted to seeing Lynn as he is but both will miss playing ball together, or taking walks, or fishing together at the river. Dealing with dependence For me, as his spouse, my life centers around Lynn. All activities in my life come to a halt when he calls for help. I have often burned food, missed calls, lost something I was working on, gotten too little sleep, been too sharp in responses, and eaten just to stay awake gaining too much weight as a consequence. I’m totally out of shape because there is no time left in the day to attend an exercise class or go for a long walk and besides I have to be close enough by to cath him or hand him things if he needs something. He is totally dependent on me and I have to be careful not to become co-dependent toward him. I have to remember to let him be him and let me be me but those lines blur very easily when my life is so wrapped up in seeing to his happiness, health, and maintain his abilities. I am his therapist, nurse, typist, consultant, rehab specialist, banker, cook, housekeeper, agent, partner, and spouse. Without me and my help, he would not survive in as good of a condition as he is in now; so, I carry a great burden of responsibility toward him and HE...ALWAYS...COMES...FIRST. If he’s cold and I’m hot, I turn up the heat. If he wants to lie down during a family event, I leave the event even if I’m having a good time. If he needs special equipment, I buy it even if I needed something else. I get him ready first for church and quickly get myself ready in 5 minutes (just throw on clothes, run a brush through my hair and head out). I often feel there is no more “me” but only “him” with a little “us” thrown in. In this together I fear for the future. I know his life depends on me. I worry about being able to continue to work long beyond when I should be able to retire just so I can afford to care for him as well as he needs. I worry about what happens if I die or become disabled and can no longer be his caregiver. I resent not having any time to myself but then fill what time could be mine with doing things for him; so, I’m my own worst enemy. I watch for every change in his condition to attack it before it gets worse. I cook his special meals and heat up frozen dinners for me when I get a chance because his grass-fed meats and organic vegetables are so expensive. There is no part of my life that is not affected by his MS. I am his legs, his arms, and his strength. I fight his battles and share his defeats. We are in this together to the end because we are family and that’s just how this family works. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] ,You think we get tired of living with a chronic disease? Then just imagine for a moment what the people closest to us must feel – they have to get so tired of it as well. Whether you call them caregivers, or my preferred name of care-partner, the people closest to us carry the burden of our disease in their own way. Coping with Caregiver Burnout When Caring for A Person with Neurodegenerative Disease: A Guide for Caregivers,1 published in the April 2017 issue of the Archives for Physical Medicine and Rehabilitation, helps us better define burnout and what can be done to prevent or recover from it. The authors for this information/education page of the American Congress of Rehabilitation Medicine (ACRM) include Deborah Backus, PT, PhD, of the Shepherd MS Institute , Atlanta Georgia. Dr. Backus also volunteers on the research committee for iConquerMS and is President-Elect of ACRM. When I think of caregiver burnout I picture the physical exhaustion that comes from being on-call 24/7 to help someone and Dr. Backus and her co-authors list a number of ways people can experience burnout including physical, emotional and mental exhaustion. The dangers of burnout aren’t just the physical problems but how attitudes toward the situation can change and ‘negatively affect the way you care for your loved one. You may change from a positive and caring person to a negative and unconcerned one,” which can further impact the health and wellness of everyone involved. Have a plan and know the signs of burnout A key point to this look at burnout is caregivers should be proactive, have ways in place to reduce stress, and recognize the triggers that can create additional physical and emotional burdens on the caregiver. The list of signs that a caregiver is experiencing stress could include additional physical, psychological or financial burdens and social withdrawal that creates a feeling of isolation. If you are a caregiver, you are probably saying you already know all of this in one way or another, but do you have ways to get relief? The authors give a hit list of ways caregivers can help themselves, including: Educate yourself about the disease, treatments and support available Communication with the health care professionals, as well as with your loved one is critical, especially in making decisions Maintain your own wellbeing by creating healthy lifestyle habits, regularly engage in some form of physical activity and don’t feel guilty for taking time for yourself. Identify your own local support, whether it is in a group or your extended family and friends. Keep a sense of humor, it helps to lighten the stress of the moment and long term The impact of acceptance These are fairly obvious ways caregivers can help themselves and their love one, but there was one item on their list that caught my attention more than these others - maintaining psychological well-being. In addition to finding ways to take a break from caregiver duties, and counseling to talk about the stress of caregiving, the article highlights a point not often talked about … acceptance. “Acceptance: be aware of your sources of stress. It may be challenging, but it is important to accept your loved one’s disease process. Acceptance can help you live in the present moment and make decisions for yourself and your loved one.” As part of acceptance, their literature review supports developing a routine for consistency of each day, and learning relaxation techniques such as yoga, meditation or music. They also write about the benefits of finding either group or individual therapy to learn ways to modify negative thinking and create positive thoughts. We might also need help figuring out what help is available, and the article lists a number of community resources for caregiver services. Whether you are on the giving or receiving end, talking about burnout before it occurs is key to maintaining a healthy caregiver relationship. I hope this provides ideas that might help you to take better care of each other. Wishing you well, Laura [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] OK. We get it. For those of us living with Multiple Sclerosis, most are quick to say that the disease doesn’t define who we are. I have MS, MS does not have me, right? It’s an inspiring slogan for us to mentally maintain control over this chronic disease of the central nervous system. But this motivational mantra is limited because none of us is facing this disease alone. Think of your caregivers. You know, the family members, the friends or the neighbors who offer the help you need to manage and improve the life you’re living in spite of MS. Perhaps a more empowering phrase to use is, “We have MS. MS does not have us.” Just look at us. We both have MS and are the primary caregiver for a spouse living with the disease. Jennifer was diagnosed in 1997 and has secondary-progressive MS; Dan was diagnosed in 2000 and his is relapsing-remitting. We met at a National Multiple Sclerosis Society event in 2002, were married in 2005 and truly have been living happily ever after. Living with MS for nearly two decades, we know the unpredictable challenges of the chronic illness. But being married to a spouse with MS for more than 12 years, we also understand the difficulties that come with caregiving. But it hasn’t always been easy. There are a lot of obstacles that MS has tried to put in our way, but we’ve found a few ways to join forces and overcome them together. Here are four tips we’ve used that can help you and your caregiver tackle MS head-on and stay strong in this fight. Stop, ask and listen There’s a lot going on in life. We all are surrounded with distractions, everything from television to social media, family and work commitments. So it’s not enough for you both to just hear what the other person is saying. We all need to stop. Clear our minds of clutter and preconceived notions, and then truly listen. Listen and then ask questions so you fully understand what your caregiver or loved one is saying. This ensures you both are on the same page and are moving forward together. For example, Jennifer has recently had more difficulty with her right arm and can’t easily feed herself. This is very frustrating for her when she can’t get the food to her mouth and she spills it on the front of her sweater. It’s similarly frustrating for Dan to watch this happen, and he’s ready to swoop in and feed her. Not so fast, Jennifer says. If Dan starts doing this, Jennifer will get accustomed to his assistance and stop trying. But at the same time, he didn’t want her frustrated and have to continue cleaning up her spills. After a few tense meals and related discussions, we heard what the other one was saying. We since have worked on strategies to strengthen Jennifer’s arms. And Dan knows not to instantly intervene, but Jennifer also knows it’s alright to ask for assistance. Practice patience A little MS humor: Doctors aren’t the only ones who need patients. Haha. See what we did there? Patience is a necessity in a caregiving relationship, whether it’s between spouses, parents, children or friends. In the example used above, we both needed patience. MS changes every day and never is the same exact disease twice. Empathy is a major factor that helps to increase patience. Putting yourself in the other person’s shoes takes patience to pause and see the situation from his or her perspective. This makes it easier to understand why they (not you) feel the way they do. Caregiving guarantee: Mistakes will happen Contrary to what we all would like to believe about ourselves, nobody is perfect. Need proof? Combine an unpredictable illness with two people trying to what they think is the best way to deal with certain situations. There is no guide that has all the answers. Remember that both parties in the caregiving relationship has overall best interests in mind. Cut each other some slack and hold on! Like when we were on a recent trip for a speaking appearance in New Orleans. We drove to Detroit and stayed in a hotel there so we could catch an early morning flight to The Big Easy. We never expected Dan would get sick that evening and couldn’t help Jennifer make transfers in and out of her power wheelchair. We were stuck and hoped Dan could sleep it off throughout the night. First thing in the morning, he was weak but was confident he could get Jennifer out of bed and into her wheelchair. “You sure?” she asked. “I can do it. I’m good,” he said. Not quite. A failed transfer, and Jennifer fell to the floor. It was a controlled collapse, but we still needed to call the paramedics to get her back into bed. Jennifer wasn’t sure the transfer was in our best interest, but Dan knew we couldn’t move forward if we both were stuck in bed. But there was no blame for the mishap. Shared apologies, and shared acceptances. We understand that stuff happens. And stuff will happen again. Always remember you’re on the same team When it comes to a caregiving relationship, you aren’t in competition with each other. Remember that you both are on the same team and you’re battling the disease together. Put up a united front. Trust your teammate and the strengths you each bring to the team. It may sound cliché, but teamwork makes the dream work. And after all, aren’t we all dreaming of happily ever after? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],Millions of people are caring for loved ones who are sick or disabled. In fact, some 25 percent of U.S. adults report providing care or assistance to someone with a long-term illness or disability.1 In our 2020 Caregiving In America survey, we explored the experiences of people serving as caregivers. More than 500 people completed the survey, and they provided a unique look at their role. Caregivers mentioned that they are spending about 30 hours per week providing care, and nearly half do not get any help from others for what they do. All told, some 90 million Americans are caring for loved ones with disabilities, disease, or chronic conditions. While being a caregiver can be rewarding, it can also cause stress and depression.1,2 The good news is that there is help out there. While there will be good days and bad ones, plenty of resources are available to help keep you feeling supported, positive, and healthy. Maybe you would like to attend an in-person or a virtual support group. You may want to hire a reliable caregiver to give you an occasional break, or perhaps you would like to learn some stress-relief techniques. Here is a helpful guide to what you will find. General resources for caregivers Family Care Navigator helps family caregivers find public, private, and nonprofit programs and services nearest to their loved one, whether that person lives at home or in a residential facility. Government health and disability programs, legal resources, and disease-specific organizations are outlined; you click on your state to find services available to you. The Caregiver Action Network’s Care Support Team can help you navigate a variety of complex caregiving challenges. Experts are available to take your call from 8 am to 7 pm EST. The National Center for Chronic Disease Prevention and Health Promotion offers advice on how to communicate with the care recipient’s doctor, plus tips on what to do before, during, and after the person’s doctor’s visit. It is run by the Centers for Disease Control and Prevention (CDC). The CDC also has a Complete Care Plan that lets you summarize the care recipient’s health condition and current treatments for their care. The Eldercare Locator offers a variety of resources for caregivers. Visit this site to learn where you can get help with transportation, what services may be available to older Americans who are veterans, or how to find activities and wellness programs for older adults. Several free, password-protected sites help you organize meals and other services that your loved one may need: Lotsa Helping Hands, which has the option to share calendars for care team coordination Tyze, which allows you to quickly and easily build a network for support and stay connected to your care team CaringBridge, a site or app, that includes tools you need to keep your family and friends updated while caring for your loved one. Virtual support groups For some, living in a rural area, difficulty traveling, or being in large groups of people can prevent people from finding and attending in-person support groups. Those who prefer to find online support, there are places out there for you. Caregivers Hub Support Group is a closed group on Facebook where caregivers can openly share their experiences and ask questions. Caregivers Connect is another closed group on Facebook where caregivers come together to connect and share stories and information. Caregiver Support Community is for non-professional caregivers and is a good place for sharing your story and learning about what other caregivers are experiencing. Caregiver Space Community, part of the nonprofit TheCaregiverSpace.org, is a community of family, community, and professional caregivers who want to share their experiences. Finding a qualified professional caregiver If having another caregiver to help you sounds like a great idea, there are a few resources that are worth checking out: Caregivers section of the National Association of Area Agencies on Aging, which helps connect you with local providers who can help you create a caregiving plan, address specific challenges, or identify support services. National Respite Locator lets you search for respite providers and programs, search for respite funding, and provides general family caregiver information. Family Caregivers Alliance is a useful resource if you are considering hiring in-home help. Resources for long-distance caregivers If you are caring for your loved one, but you don’t live close to him or her, there are Eldercare Locator, a search tool offered by the U.S. government’s Administration on Aging, can connect you to various options for care, or you can call the service at 1-800-677-1116. The National Adult Day Services Association helps you find programs that may be available to your care recipient. More than 260,000 participants and family caregivers are served by over 5,000 adult day services centers around the United States. Resources for those caring for someone with cancer If you are caring for someone living with cancer, there is plenty of support available to you. Cancer.Net offers information on topics such as cancer research and treatment in an audio podcast format. Cancer Support Community offers professionally led programs designed to help caregivers. The website notes that it has more than 170 locations worldwide, along with programs such as support groups, educational workshops, and yoga classes. CancerCare offers free professional support services for caregivers and loved ones, along with additional information and resources for caregivers. Support is available via phone, online, and face-to-face. The American Cancer Society offers an interactive caregiver resource guide and a caregiver support video series. The 2020 Caregiving In America survey was conducted online from September 2019 through August 2020. Of the 577 people who completed the survey, 348 are current caregivers, 36 are past caregivers for someone who is alive, and 193 are past caregivers for someone who is now deceased.

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