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}}:"],With Relapsing Remitting MS (RRMS), Lynn would have an exacerbation that could last days or weeks, but he would return to “normal” at some point and nothing much changed. With Secondary Progressive MS (SPMS), he stopped getting better. He happened to be in a clinical trial at the time he transitioned to SPMS so he was seeing his doctor every three months and getting the full court press evaluation. We started noticing that his scores were getting worse over time without any evidence of having had an exacerbation. He was not walking as far and his strength was less. Response times to questions got worse and overall he seemed to feel worse most of the time. That’s when his doctor decided his MS had changed from RRMS to SPMS and we realized we needed to look into making changes in our lives. Referrals to helpful resources We were not fortunate enough to have a comprehensive approach by his doctor to managing his MS. His doctor is a neurologist and he does not offer guidance on his care or alternate treatment measures; just on disease treatment. However, when I would bring something up, he would make referrals to other resources. His physical medicine/rehabilitation doctor has probably been the most helpful. He arranged for Lynn to be measured for a power chair and he’s talked to him more about dealing with his other losses and some measures worth considering in either preventing further decline or improving overall health. Mobility limitations I never realized there were so many mobility assistance options or that it was important to have someone who knew what they were doing to measure a person for the proper size wheelchair and accessories. His mobility assistance devices progressed from a walking cane (did you know you are supposed to put the cane on the strong side to use rather than the weakened side so that balance is better?) to a rollator (he refused a wheelchair for a long time so I used his rollator as a wheelchair instead) and from a rollator to a power wheelchair. For the power wheelchair we contacted a local physical therapy group who ran a wheelchair clinic. At the clinic, measurements were taken to make sure that back support, leg and arm supports, thigh support, and head supports were all the correct length and offered the quality necessary for his normal activities. Once we received the wheelchair, I turned to the durable medical equipment company that brought us the chair as my resource for accessories and repairs needed on the chair. Skin care Skin care is so very important. Not being able to move voluntarily, it’s very easy for an area to break down due to the decreased blood supply caused by compressing blood vessels by body weight and gravity. Repairing broken skin is also very difficult for the same reason. Having a nursing background has really helped with this but I’ve also consulted with other nurses to ask, “What is the latest in skin care and damaged skin treatment?” For the most part, using a barrier gel or ointment works pretty well. Some people use Vaseline which is good for keeping moisture off the skin but doesn’t have the vitamins or other ingredients that support skin regeneration if the skin has started to break down. Right now I’m using an ointment that has calamine in it and covering it with a non-stick bandage that I tape sparingly to the skin with skin-sensitive tape. I’ve also used Mepilex which is an excellent preventative bandage for skin break down but it is also pretty expensive. I order mine from Amazon (I get almost everything from Amazon because they deliver to my front door and I can’t get out to go shopping.) A doctor’s order is not required. Urinary catheter supplies I have to intermittently catheterize Lynn throughout the day except for days when I go into work and then I put in an indwelling catheter so I keep supplies of both around. Initially, we had home health seeing Lynn when he came out of the hospital several years ago and upon discharge was no longer able to voluntarily empty his bladder. They gave me the name and contact information for a supply company and I order my supplies directly from them but I’ve also ordered through our pharmacy; it’s just more convenient for the supplies to come directly to my house. I order sterile gloves (They are not required for home catheterizations but I like to reduce the risk of possible introduction of a bacteria into this urinary tract.), a size 12 French self catheter (I use a small size that takes longer to drain his bladder but is less traumatic to his urethra) and I cleanse the area with chlorhexidine (Hibiclens) which is less irritating than betadine ointment. When I put in an indwelling catheter, I order a kit that has all I need for insertion including a catheter bag but still order a separate catheter so I can get a small gauge one. I also use a Statlock Foley catheter holder to keep the catheter from moving around with motion. Movement irritates the insertion area which increases the likelihood of an infection developing. Finding what you need I’ve used lots of things in providing for Lynn’s care over the years; some I find out about through word of mouth but much of what I find, I come across when searching the web. I search on words like, “handicap accessible” or “disability accessible.” I’ve found lots of adapted clothing such as pants that have no bottom but cross over in back; ponchos that cover both him and the chair when going outside, clothes that Velcro shut in back, etc. Other good sources for information are Disability Navigator, Family Caregiver Alliance, and the National Alliance for Caregiving. There is also information on the National Multiple Sclerosis Society website under Resources and Support. And there’s me. Please feel free if you have a question to send me a comment or reply. I may not know the answer but I’ll certainly try to find you one. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

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