My Mom Has Ms...

My mom was diagnosed with MS when I was about 8 or 9 years old. After her diagnosis she went through a really hard time (divorced my Dad and attempted to start dating again). Through all of this her health slowly deteriorated from tingling in her hands and feet to extreme difficulty with mobility, bladder control, etc. However, despite it all she still managed to find a wonderful husband who loves and cares for her. Honestly he is the best man I have ever known...completely selfless and entirely in love with her.

I live fairly far from my mom and only see her occasionally, but when I do I can clearly see that she is getting worse and worse. It is almost like she has given up completely. She depends on her husband for EVERYTHING. She won't even leave the house unless he is there, won't eat unless he puts food in front of her...she won't do anything to help herself! And I am terrified that if something ever happened to my step father that she wouldn't survive it...emotionally or physically. Maybe I am selfish, but I am only 21 and I don't know what I could possibly do to take care of her if it were solely up to me...I have no money or stability and honestly I wouldn't want to give up my whole life to care for a person that seems to have such little will to live...

I guess it would just be great to hear from someone in a similar situation...or someone who can give me advice on how to cope with a mother who refuses to be happy with any aspect of her life. I know she is sick and I am entirely sympathetic to her situation and try to help research herbs she should be taking and diet plans she should studies she should read, but she never even tries to find any hope in anything. Maybe I am naive, but a difficulty walking and fatigue isn't a cause to not want to live your life at all...I don't know what else to say. I am just tired of seeing her struggle and tired of feeling so guilty that I can't fix anything.
jessica711 jessica711
5 Responses May 13, 2012

I'm glad you wrote this I was beginning to think I was the only one. My mom was diagnosed when I was 7 and hasnt been the same since. Its so hard to have simpathy for someone who doesn't seem like they want to help themselves she depends on my dad for everything. And I feel like she's stolen his life too. Its so frustrating. So many days I hate her. Its like she does it to least that's how it feels. I can't take it anymore I try to be supportive but its so hard.

Do any of you struggle with the worry that you will also get MS one day?

I have done so much research and I know that it isn't technically a genetic disease, but I know I do have a higher percentage because of my mom. In the last couple of years I have become almost obsessed with trying to prevent myself from having any other "risk factors" besides the genetic link.

Even though nothing is technically proven, I have taken some of the studies, that show that people can prevent MS and other autoimmune diseases by lessening their consumption of saturated animal fat and keeping a lower body mass, to heart in an almost compulsive way. I have become a vegan, I exercise excessively, trying to keep my body fat percentage at it's lowest and I feel like the fear is taking over my life. I just can't stop thinking that I don't want to end up like her...and it makes me feel so guilty. This took a really large toll on my last relationship because, among our other issues, he just couldn't handle the constant stress I had over whether or not I would one day get sick. I am only 22 and I don't want to have these fears forever...

If any of you have any of the same issues, I would love to hear your thoughts. :)

My mother was diagnosed when I was 13, but we always knew there was something wrong with her. Mysterious ailments, the numbness, pain, falls, dropping things, strange behavior. I am an only child and my parents separated when I was 22. My mother moved back east (we live on the west coast), to live with her mother. I was newly married when she moved away. After that, I recall feeling nothing but guilt. Guilt that I did not see her enough, guilt that I did not talk to her enough. I eventually got divorced when I was 29 and had been going through tremendous turmoil in my own life. About that time my mother's condition became worse and worse. She was eventually unable to live at home and had to be moved to an assisted living facility. I went to see her frequently in the beginning, one time I flew back four times in the span of a year, all the while trying to maintain my job and help pay for her expenses, the flights, my house.....I got into serious financial trouble, the chronic back pain I had since I was in my early 20s became severe and relentless, and I became extremely depressed. For the last five years of her life, I did not see her. I know I am a terrible person for that. All I have as an excuse is that I was so depressed I could barely take care of myself. It was all I could do to get to work and try to pay my bills. I would get calls from the assisted living about various problems she was having and I would try to deal with them the best I could, but it was so hard. She was just going downhill pretty rapidly and even though she was essentially wheelchair bound she kept falling and falling. I hate her family with a passion. They told me what a horrible daughter I was, how I should have moved back east and lived with her (she needed 24 hour supervision....when would I go to work?) and I don't make enough to hire a caregiver. Also they suggested that I should move her out to CA to live with me. She could not travel 3000miles! She could barely take a 30 minute car ride most days. Additionally, again, when would I work? I looked into facilities out here for her but the prices were outrageous compared to what we were paying for a very nice place back east, we simply could not have afforded it. I didn't even talk with her on the phone that much and I know that broke her heart. I do not know why. It was so hard to talk to her sometomes because I just felt more and more guilty for being such a disappointment to her and everyone else. I have never felt so alone. She eventually had one fall too many and hit her head and got a cerebral bleed and it killed her. I did go to see her right before they took her off of the ventalator, and I tried to tell her how sorry I was for being such a horrible daughter. I truly despise myself and think that I am a terrible person. I don't know what else to say.

I feel like guilt is a common thread for all of us. I don't know if people who don't have a chronically sick parent know what it's like to have guilt as a predominant feeling when thinking about their parents. The roles got switched so early for me. I became my mother's caregiver. Many adults have to deal with that, but it is usually when they are in their 50's and 60's and have already established themselves. I find myself relating to women who are twice my age! My mother has been living in a nursing home since I was 14 years old. I moved a couple of hours a way for a job and it's very difficult for me to call her. I break down crying almost every time. I want so badly for her to be happy. You're not a terrible person. You are just human. I also went through a period where I didn't see my mom as much. And honestly it was because I too could barely take care of myself. It's hard enough essentially not having mom, without the added burden of feeling like a I'm a bad caretaker for my own mother. It's like feeling like a bad daughter and bad mother simultaneously.

Hi there,

I'm in a similar situation, my mom also had M.S. She's been struggling with it since I was 5 years old ( I'm twenty one now) and it has slowly been getting worse and worse. It has been quite a tumultuous ride since then, divorce of my parents, my father's alcoholism, my mothers re-marriage, divorce and now my parents being together again, my father 10 years sober. It has gotten to the point that it is just my father taking care of my mother, as she is bed ridden and needs to be fed, changed, etc. It is really hard. Reading through both of these posts brings so many feelings up, as I can relate very well. The number of times I have felt guilty about not helping enough, not being a strong enough person in my mom ( and families) life is uncountable. I have only started to try to console myself by understanding that I am HER daughter, and I deserve a life of my own as well... and so importantly, that she would want her daughter to have a life of her own. I've thought about it in this way... How much of a waste would it be if two lives were changed for the worse because she became sick. I should instead try to make the best of my own because of what she couldn't do, what she would have wanted to do. But, it is still hard, and these realizations do not change the feelings that we have.
I'm not sure if you live in Canada, but we have CCAC here, and they are helpful. They have a lady ( and a very wonderful lady) come to my house five times a week for three hours a day. She feeds and baths my mom and just sits and talks with her. Although it isn't much, my dad can relax for that time and focus on the things that he wants to do, and it just offers such a relief to all of us. Maybe there is something like that where you are from, and maybe your mom would be interested.
I'm sorry you are going through this, and I understand. It comforts me to know there are others who are going through this as well, although I wish non of us had to.

My mom was diagnosed with M.S. when I was eight years old too. I'm now thirty years old and have only recently started to reach out to other people regarding the toll that her illness has taken on me. In my opinion, it bodes well that you are reaching out for support now. I often feel really guilty about my mom's illness. And then on top of that I feel guilty about feeling guilty and berate myself for not being stronger. It's an overwhelming feeling to be so powerless in the face of such a scary disease. I have to remind myself that I'm not my mother's caretaker-I'm her daughter. It's not my fault she's sick. And as much as I want to help her I also need to help and support myself because her disease doesn't just effect her. My mother has been in a nursing home for 16 years, so she's pretty pacified. I would get really frustrated with her because she wouldn't do things for herself-she wouldn't even try-but that's part of being institutionalized. I had a counselor explain that it's really common when someone requires constant care for them to become dependent and initiate things less and less. M.S. effects people both physically and mentally. I wouldn't be surprised if your mother is struggling with depression as well. I'm so glad you wrote something. I was just thinking I'm the only one with a mom who's this sick and the only one willing to admit it's a struggle. I feel a lot of anger and grief about my mom's illness and I think that's normal. If your mom was diagnosed with M.S. when your eigtheenish that means you've been living with this for at least ten years. That's a long time and it takes a toll.