Dealing with an MS parent

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Dealing with an MS parent

Postby moz333 » Sat Apr 25, 2009 6:05 pm


I'm posting here because I'm really not sure where else to turn for advice on this. My mother was diagnosed with relapsing-remitting MS in 1999. She has definitely declined since then, but is still pretty functional in terms of mobility, and less so dexterity. She has improved a good deal since starting Tysabri about one year ago. However, the cognitive decline has really been an issue as of late. She has marked emotional lability and needs to read or hear things several times, often more, to understand them. The most devastating impact of this problem has been on the family dynamic and my relationship with her.

She has always been a rather pessimistic and critical person, but in the past several months it's gotten to the point of being overwhelming. I am an only child and by most measures I am a good kid. More so than most of my peers, I was obedient and cooperative. I've always been a good student. I just graduated from an Ivy League school. Due to the state of the economy and job market, I'm back home temporarily with her and my dad while I look for work.

Surprisingly, the issue of finding work has not been a source of much conflict between us. Instead, she becomes very upset and offended over some of the most insignificant things. For example, if I forget to put ice in her water at dinner, or even things as mundane as my manner of dress or daily routine, if that makes sense. She becomes very passive aggressive, and acts like I've deliberately and deeply insulted her. When I try to talk to her about it, there is really no logical flow to the discussion. She constantly changes the subject or interjects with very hurtful remarks that have nothing to do with what we're talking about ("You don't care about me, you don't care about anything", "You look ridiculous" etc). She also constantly brings up a time that I lied to her seven years ago, as a 14 year old, about where I had been spending my time. Sometimes it's almost as if she makes a game of me trying to figure out why she is upset with me. When my dad is around he fends for me and she backs off but if I happen to be on my own it's really just unbearable.

It hurts very much to say this but it feels like I've already lost the mom I knew from my childhood.

On top of this is the issue of me being gay. My family is very small and I desperately want to be open with them about this part of my life, but I fear that there will be very serious, irreparable consequences on my already unhappy relationship with my mother if I come out. We are not religious by any means, but my mom has voiced some very negative opinions about gay people.

Getting this out has made me feel a bit better, but I would really appreciate some input or advice. Thank you.
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Postby cheerleader » Sat Apr 25, 2009 6:44 pm

Hey Moz...
Welcome. Glad you could share with us and get some of that out. I really hope it helps. Sometimes just writing your feelings down can give you clarity.
1. You sound like a really terrific child. You are concerned about your parents, you are respectful and obedient, articulate, and you love your Mom.
2. Your Mom has MS and MS does change personalities. It can cause depression and emotional lability (it's like a lack of a filter) and cognitive decline. It sounds like your Mom has all of this happening. This is not your fault, but as an only child, it's sometimes hard not to feel responsible for your parents' happiness. Release yourself from this. Try to forgive your Mom when she says something inappropriate. Realize this disease is bringing out her negative reactions even more, because she is not filtering. Try not to take her criticisms personally. They come from her place of pain. It is not about you.
3. You haven't lost your Mom, but she is not well. Talk to your Dad about how you can both help her physical health thru diet, exercise, physical therapy and help her emotional health by encouraging hobbies, a pet, reading, seeing friends, gardening, finding things that bring her joy.
4. Take care of yourself. Your homosexuality is not something that needs to be a your life knowing that this is who you are. Look for ways to develop an honest dialogue about being gay, maybe with your father first. Be patient. Also find time to be with friends, to enjoy your life. You are a young person, and deserve to live your life, without guilt.

Wishing you all the best- in healing and dealing with your Mom and her MS-
the aging cheerleader
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Welcome, Moz

Postby lyndacarol » Sun Apr 26, 2009 10:31 am

You are in an unfortunate position, we wish we had the answers for you, we can only offer ideas for your consideration.

We people with MS are subject to the same problems as the general population; in fact, people with MS are very likely to develop a second or even third "autoimmune" disease (There are over 80 of these.). And, of course, there are many additional problems possible, too.

Although a personality change is possible with MS, your description of your mother's and your comment, "It hurts very much to say this but it feels like I've already lost the mom I knew from my childhood," sound to me like something more than MS. The fact that she constantly brings up a seven-year-old memory is also indicative of Alzheimer's disease (in which the memories of the past are more available to the individual than recent memories.) This personality change was observed in my mother-in-law when she first exhibited signs of Alzheimer's disease. Your comment was uttered by each of her grown children.

Though Alzheimer's is thought of as a disease of the very old, I had a good friend who developed symptoms in his 40s and had to retire from his job at age 50 because of AD.

I do not wish to bring you more unhappiness, but a doctor's evaluation for AD might bring you peace of mind or an understanding that her criticism is not really directed at you. The fact that you have registered for this website and are seeking help with your mother's situation indicates that you are indeed a "good kid" and I commend you for seeking it any way you can.

As a recent college graduate, you must be in the habit of studying and I encourage you to read and study what you can on MS. We welcome you here to share information, to pose questions, and even just to unload at times.
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Postby Wonderfulworld » Sun Apr 26, 2009 12:05 pm

you sound like a good guy - sorry you and your family are going through such a tough time. It's really hard when MS changes a person, and of course that will have an effect on your family.

I'd take a slightly different view of the situation. I think it sounds like you and your Mum are bouncing off each other at the moment, and it sounds like there's a lot of latent anger, both in you (at her, for not being supportive, for all the aggro, for being back at home and having to put up with negativity and her criticism) and in her at you - possibly for all the above.

I don't want to be putting words in your mouths. But active MS is hard. Hard emotionally to go through and hard for all those around you. Your Mum could be feeling frustrated with her limitations, her losses due to MS and very scared about the future. Personally speaking I'd find it hard to deal with a child pointing out my emotional lability and my memory problems. It's hard to take, you know what I mean? - hard on your pride and sense of self. She could be scared, angry, frustrated...any of these.

Maybe what I'm saying is for a second, take the MS out of the picture. What if your Mum is upset by all that's going on in the family. If she didn't have MS, and she was critical, pessimistic, angry - how would you handle the situation then? You're back in the family home - never an easy dynamic if you've lived away and return. With no job she could be worried about you, angry with you - I don't know her so I can't say what her feelings are. But I think you need to talk to you Mum, and perhaps with your Dad there too. Perhaps family counselling would help you all.

Yes the behaviour changes can of course be down to MS. I know I don't grasp ideas, situations, concepts etc as quickly as I used to. I have a dreadful memory. But a good 70% of that in my case has been to do with disturbed sleep over a long period of time. MS neurological pain, bladder problems, worries, depression - they all can impact on sleep. Perhaps your Mum is not sleeping well. That can be fairly easily alleviated for her, and that at least might help her outlook on life, her memory, her mood.

Is there an MS support nurse with the neurology unit your Mum attends>? Could, when the tension is a bit lower, you suggest she asks about her memory problems then?
I really hope things get better for all of you, and I really hope you don't mind me throwing in a slightly different view.
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Tecfidera, Cymbalta, Baclofen.
EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
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Postby Shayk » Sun Apr 26, 2009 12:43 pm

She has marked emotional lability

Just wanted to add that you might find this article of interest....

An In-Depth Look at IEED in Multiple Sclerosis
Involuntary Emotional Expression Disorder as a Symptom of MS

It appears there may be some medications to potentially check out if your Mom isn't already taking one of them.

Best to all of you

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Postby moz333 » Fri May 01, 2009 12:52 pm

Just wanted to thank you all for your advice. I am looking into the things you have mentioned.
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