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Share your as experience as a caregiver

  • By Kelly McNamara Keymaster

    As a caregiver, you’re providing support to a loved one. But, finding support for yourself can sometimes be so difficult. Share your experience as a caregiver and talk with others who are also caregiving for their loved ones.

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  • By Happy57

    Newly married 6 yrs now, my husband new of my diagnosis on third date.
    So, juggling husband & primary care giver “roles” is fustrating need any suggestions.

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    • By mamajamma

      Just when I feel like I’m balancing all the plates something comes up and I have to recalibrate. I wish I had suggestions on how to balance spouse and caregiver but all I’ve got is take it one day at a time. I try to remember that my spouse did not choose MS.

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  • By aparks

    I am the mother of a son who was recently diagnosed at the age of 39 with MS on 10 August. I immediately started reading and researching to learn all I can about this disease.

    One of the books I read has given me and my son great hope:
    ‘Multiple Sclerosis and (lots of) Vitamin D’ by Ana Claudia Domene. My son has started the Protocol. I hope this book is helpful to others. I will post updates about my son’s progress.

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    • By Erin Rush Moderator

      Welcome, aparks! Thank you for sharing! We’re glad to have you here and please do post updates on your son’s progress.

      Best, Erin, MultipleSclerosis.net Team Member.

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  • By FlowerDaughter

    My father was my mother’s caregiver and shockingly passed away last year, leaving me to care for mother. She’s going on year 25 with MS and in a wheelchair for about 8-10 of those years. My life feels over. I’m in my early 30s and find myself pissed off at her for having me when she was already having symptoms before she became pregnant. I find myself looking forward to the day she’s gone because I won’t be burdened anymore even though she’s my mom and I love her. I feel like I’m being punished but I obviously hide how I feel every day from her but this is a truly terrible way to live. My youth is wasting away caring for my mother.

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    • By Donna Steigleder Moderator

      @flowerdaughter, Caregiving, under the best of circumstances, is difficult but when it’s an unwanted burden, taking it on becomes more than a person can sometimes handle. I recommend that you seek assistance from a consultant regarding options for caregivers to relieve you from the full-time caregiveing responsibilities you now have. If your Mom is wheelchair dependent and on disability, she may be eligible for Medicaid as well as Medicare which would allow for in-home help. If you don’t know where to start, try your local social security office for referrals or if you have either a local MS office or online senior navigator resource, give them a call. Both can offer you information on where to start looking for assistance so you don’t care the burden alone. You want to start now looking for a plan to take the burden off your shoulders so that you don’t lose your relationship with your Mom due to resentment.

      You might also want to consider seeking couseling for a while to have someone help you cope with the magnitude of adjustments that are required from your role change from daughter to surrogate Mom/caregiver. It’s a difficult transition and often filled with anger and resentment. I hope this helps. Let me know what else I might be able to offer you as support. Becoming a caregiver s very daunting and exhausting physically and emotionally. Hang in there. Donna Steigleder, Moderator

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    • By FlowerDaughter

      Thank you for the advice. I’m actually not in the U.S. and we have support workers come in 3x a day to help but it’s still too much. Weekends are almost entirely on me and someone needs to be checking in daily to make sure everything is running smoothly, she’s actually getting showered, diapers are being delivered, etc. I’m the person who has to take her to appointments, pay the bills, maintain the home and make sure she has food and is being fed, washed and taken to the toilet/getting her diaper changed. It’s all well and nice to hear that there are resources to help but at the end of the day, those people go home. The MS Society does nothing to help – they referred me to the support group my mother was already attending for 5 years. This sucks and everyone’s suggestions aren’t new – I get suggestions from people trying to help daily but they don’t realize we’ve exhausted every avenue short of putting her in a home, which I would feel guilty doing as she is so young herself. It’s just a terrible situation all around and I look forward to the day I can have my life back and she is out of pain.

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    • By Donna Steigleder Moderator

      @flowerdaughter Gotcha. I understand better now. It’s one of those situations where reality is what it is. I have your same situation but I’m 61 so I won’t have it as long and I’m the wife not the daughter but I get what you’re saying. There’s no break in the forseeable future. I don’t know about the options in your country but if it gets to be too much, can you have her admitted to a facility permanently and go there to visit regularly for support? I suspect that would be better for your health in the long run since long term caregiving is not a healthy lifestyle.

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    • By Contalita

      Hello,FlowerDaughter, I’ sorry that you’re having a hard time, & I understand how frustrating it must be, in 1994 my mother was diagnosed with Alzheimer’s when she had the diagnosis she was far stage but in the middle, I am one of five children and always been closest to my dad, then my mother,so I think it was only natural for him to ask me to go with him for her first appointment and that’s where we received her diagnosis, my dad an Old Navy guy became the best nurse her, and although there are five of us I was the one that was mostly supporting my father in his efforts, Flower Daughter, luckily things have changed since 1994 and there are so many more options for people that are caregivers not to mention being compensated for, I don’t know first how about your mom is but if she’s 50 and over you can check into the Department of Aging for your city, also; if you haven’t already when you find sometime, please get acquainted with her insurance and see if there’s a program that allows for caregiving services, all so many churches have different programs that can also assist you, Flower Daughter, it’s a good thing you found this site if it’s very helpful and as you found out it’s not just for people with multiple sclerosis I don’t know about everyone else of course but I’m with you and I’ll keep you in my prayers.

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  • By vvxjr9

    I can imagine how you feel It is horrible to be responsible for caring for your mother for who knows how long. Are there any volunteers around that can help you? I know how you feel about your mother being pregnant with you when she knew she was a carrier of MS. My mother was a guardian of her 7 brothers and sisters. She complained about that experience a lot. After all that, why in the world would she even want three children of her own. My mother took her secret about MS to her grave. I had suffered symptoms for 40 years and misdiagnosed a lot by doctors. By the time, I finally received the news that I had MS I was 61. I had one living aunt and I called her to ask if my mother knew that there was MS in the family, yes she did and I even had cousins that were in wheelchairs. I was and am furious. My mother did this to me and believe me, I do say that a lot. I am so sorry that you are going through this, especially when you are so young. I’ll be thinking and praying for you.

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  • By MMS0507

    Hi, I’m new here and I’m desperately looking for other caregivers-spouses because I’m having a hard time coping with the explosive rage episodes that last hours and sometimes days. My husband (44) was diagnosed w MS about 15 years ago. We are married for 2 years now and he’s partially disabled in the sense that he’s able to work and walk, to a degree until overheating or fatiguing. I feel so incredibly lonely, and when discussing my home situation with my therapists, the suggestion to improve my situation seems to only be to leave and I’m not prepared to do that. I love him so much it appears to family and friends that I love him more than I love myself because of the way I let him treat me. He will fly off the handle for minimal things and have absurdly angry reactions. I’m not always the target but I’m mostly the target. There’s no reasoning with him and if I ask him to calm down or to please give space to allow for calmness, he gets angrier. It’s been very scary to me because it happens quite often, I’d say at least every other week. It involves terrible name calling and assassination of my character as well as threats of throwing me out of home, hiring a divorce attorney, etc. If I walk out, he’ll blast my phone/text/email with worse threats until I break down. My family and friends feel bad for me but everyone avoids visiting now because he doesn’t discriminate, he’ll rage in front of anyone and wherever we are. I’m not able to make plans to socialize or visit them because they’re usually ruined(cancelled) by the rage episodes. (I can’t travel to visit you if I have to find a place to live) Since we’ve been married, he has thrown me out several times and I have spent thousands of dollars in expenses related to that, plus time packing all my belongings so that he could beg me to stay the day I’m supposed to be moving out. We’ve tried couples’ counseling but he walks out yelling and doesn’t want to return. (4 diff counselors) I have moved cities to marry him so I had to change careers and it’s been the most difficult thing to do juggling this by myself. I feel like a total failure plus the names he calls me get to me and I believe him. My self-esteem has taken a huge hit. I don’t even take pleasure in the things I used to enjoy anymore. I feel completely isolated out of my friends and family. I can’t talk about this with him because anything that I say that could be interpreted as criticism would cause him to rage, so it’s best I just shove my feelings and deal with them with the understanding that he has a terrible illness and I don’t. Guys, please help me. Thank you for taking the time to read this and for a space that I could vent to others that may understand me.

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    • By Sbyrd2

      First all I would like to say that you are amazing! Strength, tolerance and patience you have is unbelievable most spouses would not let the door hit them in the ass! I’m sorry but enough is enough MS or not is no reason to treat you like he has. You have given up everything for him leaving you to deal with job that you are there for pay check. Verbal abuse to me is belittling, scaring, isolated and humiliating. I know first hand all to well my husband can be verbally abusive his words cut like a knife draining me. After taking it for years I decided to stand up for myself and not let him destroy me totally. The pity was played out he said that I needed to deal with pain that laying around was causing me to be lazy! Well I would love to complete all my daily task but that never happens. If your husband needs to apply for disability hopefully that can alleviate extreme fatigue. In addition I had to start taking antidepressant for mood swings and it has helped me enjoy life again and stand up for myself. He started one afternoon ranting and I completely lost it standing in his face I said no more will I tolerate your actions. Get help,to control your anger because I no longer will be the punching bag! I continued stating I will not move and then be charged with abandonment! You can go be by your self because no one will put up with your humiliating jesters, anger and MS you will die lonely filled with rage if you decide not to get help. Enough is enough I love you and forgive you but I will never forget how hostile you are if not I’m done completely! I pray you can stand up for yourself and begin to live in peace. Much love to you❤️❤️

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  • By Donna Steigleder Moderator

    MMS0507 Your story breaks my heart and fills me with fear for you. I have worked with many victims of domestic violence and I see in your story a real threat for your safety. While I know that you do not want to leave your husband permanently, would you consider leaving him for his safety and well being as well as yours? What you describe is a cycle of a type of rage typical of someone who cannot control the behavior and needs assistance. If he has MS, he may have a chemical imbalance contributing to the behavior causing th lack of control. If he continues this behavior, he could unintentionally (or intentionally during a rage) kill someone due to that lack of control. If you stay with him, he won’t have as much incentive to get help. He needs a reason to stop.

    However, don’t take any action without someone helping you do this. You need to work with someone from a domestic violence center who can help you find shelter first for your protection. You must be somewhere safe for a while where he can’t find you–a safe house.

    Once you are safe, someone should be prepared to talk him into going in for treatment; an intervention. Is it possible his family would help? He needs help. Would they participate in an intervention since he has raged against them too?

    Do you know where there is a YWCA near you? They can usually help you find resources to support you. If not a YWCA, call your local police or social services department; they will know of resources.

    I’m not suggesting you to leave him permanently; I’m suggesting you help him so you can both heal; that’s a difference. Otherwise one or both of you are likely to get seriously hurt. You can’t stay like you are because your situation will only get worse as his condition gets worse; and it will.

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  • By MMS0507

    Thanks everyone for your kind support and advice. We’ve been through this before we got married and separated exactly because of the anger. There has been some progress but the progress isn’t linear, of course and I feel like there were times where it backtracks. His family doesn’t want to get involved. I think everyone is just afraid of upsetting him further and causing more stress. His mother once witnessed it in her house, and then told me to “just handle it because he’s like Jekyll and Hyde.” His brother just tells me to get divorced. No one looks at it as caregiving since his MS is mild right now but pretty much no one deals with it like I do because I’m the one that goes with him to his infusion/appointments/besides sleeping with him. If I leave him, it has to be permanent because we’ve been through this before. I even made him sign a document to formalize his promise to quit name-calling and threatening me with throwing me out of home. It doesn’t matter just like our marriage becomes disposable at the drop of a hat when he’s in that state of mind, and I can’t help to feel that hates me and I am a problem/stressor to his life. It breaks my heart too. I feel so impotent and weak.

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    • By Donna Steigleder Moderator

      MMS0507 Situations such as yours are very difficult and those of us on the outside have no idea the complexities of your daily life so I can’t begin to suggest what might be best for you but please do one thing for your safety, when you can, contact one of those agencies I told you about to get information about how to develop a safety plan for escape. If he should become so violent you need to run, you need a plan in place that you can execute without doing anything but puting it into place immediately. If you can’t reach one of those agencies, then contact me again on this site through the friends link and I’ll tell you how to do a plan. Then you’ll have one in plan for an emergency just in case you have to run for safety. It’s very important.

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  • By kennybobenny

    I’m new to this forum. My wife has has MS for 20 years. In the last year it has gotten much worse. She is now totally dependent on me. She feel and broke her leg and things went down hill from there. I have struggled most of my life with depression and it has gotten really bad. I don’t really have anyone to talk to. I try and carve out a little time each day for myself but I’m so exhausted that I just get frustrated.

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    • By Donna Steigleder Moderator

      @kennybobenny Sounds like you might have a bit of Compassion fatigue. I have been caring for my husband who has primary progressive MS since 2010 living on about 5-6 hours of sleep per night (if I’m lucky) all that time and the exhaustion can be so overwhelming at times that it just takes over my body and I nearly fall. However, if you suffer from compassion fatigue on top of that (which essentially is just that you’re so exhausted you can’t see straight), you also have come to the point of not feeling much emotion other than heaviness and dread of getting up every day. You’re doing the right thing in trying to find some time for yourself each day. You should also talk to your doctor about your health. Mine has deteriorated a lot, and when I took some measures to fix some issues I had, that helped a lot. I also started taking a short nap in the middle of the day. A 30-minute nap helped restore some of my energy and my mood. Getting outside for some fresh air briefly (as long as my allergies allowed) was also nice. I “exchanged” caregiving duties with someone too. I cared for my daughter’s children for an afternoon to give her a break from them, and she stayed with her step dad. It was still caregiving but different, so it was a break for both of us from our usual routine, so it was refreshing. Hope that helps.

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