Ask the Experts: Family Matters
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Q: I am living with and caring for my 64-year-old mother who has had MS for 16 years. She is currently able to get around her apartment with a walker, but is in a wheelchair when we go outside the house. My problem is -- the things she can do for herself she will not do. Such as personal grooming, eating, etc. How do you care for someone that does not want to be taken care of?
A: When someone has trouble doing seemingly simple, every-day activities, there are many different possibilities as to what the difficulty may be. Without knowing your mother better, I cannot be positive about what would be best for her, or what would be best for the two of you together. There are many details; such as how long this has been going on, which would help to give a better sense of what needs to happen to get your mother to be more independent.
Your description suggests the possibility that she may be feeling depressed. That could be evaluated if she has occasion to visit her doctor, or a therapist who is familiar with the impact of MS. Sometimes it can be helpful to take an antidepressant medication. That would be one option that could be helpful.
Perhaps more importantly, giving your mother an opportunity to talk with someone would be a critical ingredient in helping to address this situation. The fact that these are simple, everyday activities also suggests that the talking that needs to happen will take at least a little bit of time. It would not be sufficient to have one quick, fifteen-minute conversation about it and expect the situation to improve. Usually the things that look simple from a distance are complicated enough that people need more time to truly untangle the problem and move towards a resolution.
Perhaps having the two of you together with the therapist would be useful. It is possible that she has some feelings about her illness, and about her dependence on you, which are contributing to this situation. These may be feelings that she is unaware of, so that if you were to ask her, 'do you have feelings about the situation?', her response would be 'no'. That doesn't mean the feelings aren't there. It is also possible that there are some patterns in the way the two of you have gotten along which have become troubling for her. Again, here it is unlikely that she would be able to quickly identify and talk about those patterns.
The opportunity to explore those patterns and feelings with a neutral third person can help to defuse them and lead to more independence for both of you.
Q: I am 20 years old and my roommate who just turned 26 this January was diagnosed a few days ago with MS. She is pretty upset about it and handling it very hard. Her older brother was also diagnosed with it a few months ago. I know this is going to be a very long hard road for her. She does not have very much will power, and gets depressed very easily. Also, she has had a problem using Crystal Meth in the past. I know that this isn't good for her, but I was wondering if it can effect MS symptoms, or speed up the process etc. I am also wondering what I can expect from her in the days, months, or years to follow.
A: Thank you for your question. Your thoughtfulness about your roommate is very much appreciated. She is very lucky to have a friend like you. It certainly is upsetting for anyone to be diagnosed with a chronic illness like MS. And, many people do become depressed after diagnosis or somewhere down the road. Soon after diagnosis, it is important to learn more about the illness. The most important thing to learn is that most people, after a period of adjustment, get back to living their lives as before - working, playing, and having relationships. The MS Society offers educational programs for newly diagnosed ms patients and their families.
It's hard to know exactly what to expect after diagnosis of ms. It is often said that MS is different in every person. But most people do well in the years after diagnosis, and the treatments which are currently available help to prevent the exacerbations (attacks) which give people more problems. It is impossible to predict how any individual will do, however.
Since your friend has a history of getting depressed, and of using drugs, I would strongly suggest that she begin meeting with a counselor who knows a lot about MS and could help guide her through the initial period of adjustment. The MS Society maintains a list of such people, so your friend can call for a name, or if she would like, you could ask for the name of a counselor for her.
With regards to your question about "Crystal Meth", methamphetamine has been shown to cause long-term brain damage in users even after they stop using the drug. It is not likely that the drug will speed up the disease process, but it can cause additional harm to the user. Details about the effects of methamphetamine on the brain are detailed in the following article, which is found in the medical journal, "Neurology", which can be found in any medical library, and your local librarian could easily obtain a copy for you.
Ernst, T. (2000). Evidence for long-term neurotoxicity associated with methamphetamine abuse: A 1H MRS study. Neurology 54(6): 1344-9
Q: My 34 year old daughter (two children) has been having some MS type symptoms for the last 3 months. She has "lived" on the internet and now believes she has the disease. Her MRI, blood work, and eye examination are all clean. She is going to a neurologist again for a second opinion. I am concerned about her mental health right now, as she feels that no one is believing her symptoms. She has always been so strong and so level headed and now she is so fearful, and emotional. Any suggestions or advice that I can pass on to her?
A: It sounds like your daughter is frustrated. If she is experiencing what you call "MS type symptoms", which I take to mean some neurological symptoms, it is reasonable for her to be concerned with what is happening to her. The internet can be a great source of information, but is often a source of unreliable information. I would strongly recommend that she get her second opinion from a neurologist in a specialized MS Center which is affiliated with the National MS Society. A list of these centers is available from your daughter's local chapter of the MS Society. If she resides in Massachusetts or New Hampshire, there is a list of the MS Centers in the Summer 2003 issue of the chapter newsletter "MS Connection". A neurologist who specializes in MS is more able to distinguish MS from other medical problems, and your daughter should feel more confident in her/his diagnosis. It appears that she is experiencing some kind of medical problem, and it is important to come to an understanding of what is causing her symptoms, even if it may not be MS. There are other illnesses that at times cause symptoms similar to MS.
The specialized MS Centers have psychologists and/or social workers who can help you and your daughter cope with a possible MS diagnosis, or help to understand the next step, if she does not have MS. Your caring for your daughter is greatly appreciated.
Q: My mother was diagnosed with MS almost 7 years ago. She has chronic progressive and has gone downhill faster than anyone can process the fact. She had to stop working over 3 years ago and she has been put into a wheelchair. She can do some things on her own but is extremely dependent. She has a home health aide come in a few times a week to help her shower. Other than this help, it is pretty much just me. She will go through stages of major depression, sometimes just shutting out the world, but other times becoming outraged. It is very hard to watch her go through this, let alone live with it. I am recently married and this has put a bit of a damper on things. I love my mother more than anything and will do whatever it takes, but I feel like crying out for someone to help me. It seems like there is not much that can be done unless we become wealthy and hire a personal assistant. I need my own space, but my mother needs me too. I don't know exactly what my question is, but I know we all need some kind of help. Any suggestions on how we can all deal with this?
A: Is there a way that you can love and help care for your mother, and still have a life for yourself? That is the challenge you describe. I'm really glad that you wrote in. There are some things that you can do to help you and your mom.
First, you mention that your mother is depressed. Depression in ms is usually a very treatable condition, and if she receives treatment, your mother's outlook and even her functioning may improve. I strongly suggest that you phone the MS Society and ask them to help with a referral for a mental health provider in your area, familiar with ms. The New England Chapter of the MS Society maintains a list of qualified counselors, so that's the best place to begin.
Second, it may be that your mother needs more assistance than she is currently receiving. It would be worthwhile to look into possible additional sources of funding for home health aides and personal care attendants. You could use the help of someone knowledgeable in benefits and long term care issues. Again, I'd suggest you start with the MS Society Chapter Services Department. They might have some information, and also refer you to a hospital social worker or a benefits specialist outside of a hospital. Such a person might also help you determine if there are others in your family or support network who could help more than they are currently helping.
Third, it sounds like you are in the kind of bind in which many family members of ms patients find themselves. The bind involves the competition between care of oneself and care of the other. I often think that if MS had a personality, it would want to stop people doing what they love to do. Let's try to prevent it from doing so in your case. You are recently married, and it is important to try to prevent your mother's ms from harming your marriage. You are entitled to be with your husband. This means that you have some hard choices to make. I suggest you discuss this dilemma with your husband. You might also make use of some short term counseling to help you resolve this issue.
Your mother's needs and your needs are all very, very important. I hope that you can meet your own needs as well as you care for and about your mother.
Q: I'm 30 years old and my mother seems to "baby" me a lot now that she knows I have MS. What can I say to her to make her stop without hurting her feelings?
A: Although this question comes in the form of wanting to know a specific answer, it's a bit hard to be very specific without knowing all of the details. For example, the nature of your relationship before the MS came along, and how long you've had the MS are both critical elements in deciding how to handle this situation. Generally speaking, it's not all that hard to understand a mother wanting to take care of a child who has MS, even if that child is an adult. On the other hand, mom needs to understand that people like to be as independent as possible, at any given time.
Sometimes MS can "turn up the volume" on patterns that existed in the family before the disease came along. Or sometimes it can trigger the opposite. So, for example, a mother that was almost ignoring a child could spring to action and in a sense become overbearing. In either case, telling mom that it's important to you to try to stay as independent as possible could be a first attempt. This could be tempered, of course, by noting that the situation depends on physical problems at any given time.
If the discussion about independence doesn't work, it's likely that there's old business that's influencing the balance between you and your mother. Sometimes talking with parents about their relationship with their parents can shed light on where some of the motivation comes from to behave in certain ways. In this case, talking about independence and care-taking would be the ideas that would be useful to talk about. Sometimes, when those motivations come to light, it makes it easier to break the original uncomfortable pattern.