February 6, 2019 at 1:02 pm #15780Jaime AguilarParticipant
Hi, I am 26 years old and My mom (41) suffers from Relapsing-Remitting MS. She was diagnosed in 2016. It has been a very difficult time. My father, my brother and I try to take care of her. I drove her to and back from work for the last 2 years. My brother picks up her medicine at the hospital, my dad drives her to her doctor’s appointments and she usually has people around helping her and doing things for her.
Before MS she was already in bad shape, she is probably 35 kilos overweight. She works as a secretary in a Public kindergarten and her job pays for all her MS treatment, medicine, and tests. She will have to continue working for 4 more years if she wants to keep her job benefits. (we live in Mexico).
In the last year or so we have noticed that she has a lot of issues at work…she has switched schools three times already because of conflicts with the other staff at the school she worked. Right now she is having problems again, really stupid things like her superiors scolding her because she doesn’t have a positive and cooperative attitude at work…and that she is rude to her colleagues.
I don’t know how much of this is true since I am not there. What I do know is that many people don’t know what is MS and since they see that my mom can walk, move, speak and do just about anything that a normal person can, they might not think it’s a big deal.
The thing is, my mom is unbearable at home. I am not talking about helping her around. What I mean is that she has become a little-spoiled kid. She doesn’t exercise, she lays in bed most of the day, she is always watching videos on her phone, she eats junk food, she is rude to everyone, even our relatives, says things that are out of place or a little sensitive to talk about. She now speaks with her mouth full, she is very loud and likes to piss people off.
I can’t deal with her anymore, not like this. We have bought a treadmill, a bicycle and a little yoga mat for her to exercise but she doesn’t. we beg her to come to do exercise with us but she always says she is tired and she had a long day. We ask her to read a book, draw, assemble a puzzle or just to go out and walk with us in the park but she says she is tired and she won’t do what we want her to do.
She is just not the woman I knew as my mom. She was a professional who cared about her image and was very smart and fun to hang out with. She has become a totally different person. She has problems with me, my brother, my dad, my grandparents, my aunts, and uncles just because she likes to piss everyone off by saying things that are not supposed to be said…I think she is trying to get attention, even if it’s negative.
The other day, my uncle arrived from Peru to see us. He came to our house and my mom was in her room just laying in bed watching youtube videos. My uncle walked in and stayed for about an hour telling us about his trip, showing us pictures and he brought us souvenirs. my mom got up, sat at the table with my uncle and while my uncle talked she just looked at her phone the whole hour scrolling through the video suggestions on youtube and checking her facebook. She barely even nodded. My uncle was talking to her by the way…not me. I had to jump in the conversation to show my uncle that at least I was listening. All my mom ever said was “Yeah, that’s interesting but my arm hurts”. she said it like 10 times. When my uncle left she got up, made herself a coffee and started watching videos again. never complained about her arm hurting again.
I am really desperate because this situation seems to be tearing us apart as a family. My dad’s ready to leave, my brother left. I want to go as far as possible. Trust me, we have helped her and supported her as much as a person can, but it seems she just wants to stay in her room for the rest of her life.
Has anyone had a similar situation? maybe other people with MS could tell me what is going on with my mom and maybe I could help her become a better person and stay healthy.
Let me just say that if you see my mom she looks normal as if she wasn’t suffering from MS. She can walk normally, talk normally,sees perfectly. I know she might be struggling inside but she seems to just be fine most of the time.
February 6, 2019 at 1:22 pm #15782Debi WilsonMember
I’m sorry for all that your family is going through . MS can come with so many symptoms and emotions, and everyone’s experience can be so different . So that adds to the difficulty and unpredictable nature of the disease. I would suggest talking to her doctor about all of the emotional upheaval she is having , if you haven’t already. It sounds like MS and all that comes with it is getting her down. She may be feeling depressed. That can be an issue, being diagnosed and living with a chronic disease can very difficult . It’s possible that being on an antidepressant for a little while may help her to adjust and give her motivation again.
Your Mom is lucky to have such a caring son as you. Hopefully, others here will chime in as well and offer support. Please keep us updated on your situation.
February 6, 2019 at 8:16 pm #15787LindaParticipant
Good job taking care of mom!
I agree depression may play a part in your mom’s behavior, but if she is still working a full time job fatigue might also explain a lot. You said she must keep working to keep getting treated for her disease. That is a tremendous pressure and if she is as fatigued as I am from this disease, it might be all she can emotionally handle.
If people don’t understand her disease, like at work, she could be pushing people away, (saying leave me alone), as a way of dealing with them requiring too much of her energy. I have family and friends who are fairly educated about my MS, however, since I don’t look or seem sick they quickly forget and I have to remind them when things will be too much for me.
I would suggest your family continue your research about all the silent symptoms of MS, allow Mom time to rest after work, speak with her Dr about what symptoms might not be being treated and instead of telling her to go for a walk or exercise with her try to lovingly open communications as to what she needs, as a way to pay her back for all the wonderful years she gave you as a fun to be around mom. She is still in there, just hurting right now.
Good luck and God Bless you all.
February 7, 2019 at 9:33 am #15790Jaime AguilarParticipant
Thanks so much for your support and advice on my situation.
I won’t let my mom down, she took care of me and raised me. I want to give her back all she gave to me and more.
I talked to her doctor, they pointed her to a psychologist specialized in people who suffer from a degenerative disease such as MS. She has been seeing the psychologist for about two months and she started seeing him because we made her do it…we noticed that she missed many appointments on purpose. She is still working with the psychologist but it is a private session and I don’t really know what’s going on.
She is on anti-depressants, I believe she has been on them since a year ago…but honestly, things just got worse. She blames her anti-depressants for her sleepiness and says that she prefers to be sleepy than to be “depressed”.
About her job, well…she basically works 3 hours a day Monday to Friday. She doesn’t really do much…fortunately, her job doesn’t require much. She usually sits for 1 hour checking her facebook and the rest she sends emails or organizes paperwork on her desk.
Today something new happened. My brother bought her a new phone 6 months ago. Nice decent phone. She lost it today. This is the 4th one she loses. I bought her one, my dad bought her one, she bought herself one and this last one. My brother is upset because my mom just said, “I can’t find my phone, I think I lost it again…” I know and understand she is handling a lot of things…but I think my brother was expecting at least an “I’m sorry this happened again” but she never did. She says is not her fault she can’t keep track of her phones…but she keeps asking everyone for a new phone. (by the way, my dad, my brother and I spent 2 hours looking for the phone and we couldn’t recover it)
I will get her psychologist’s number and schedule an appointment with him to see what’s going on, I will talk to her neurologist about this situation. I really hope they can find a way to help her out. Maybe the solution is not within me…maybe it is something that requires professional treatment, medicine or some kind of therapy that goes beyond myself.
Thanks for all your comments and messages. I will keep you posted.
February 9, 2019 at 2:27 pm #15849Susan BockParticipant
Great job your family is doing. Have you researched MS. It has changed me over the years and my daughter says she is just happy i am still here after 30 years. your mom working is inspiring. i had to quit my job i loved.
after 10 years i had changed in my thinking and my depression.
would love to go on but i am leaning to be able to type. i don’t like who i have become. still i am here mostly happy and hoping tomorrow i will do more.
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