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Advice for caregiver of newly diagnosed MS girlfriend

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    Advice for caregiver of newly diagnosed MS girlfriend

    Hello MSWorld,

    My name is Andy and I have been dating a lovely woman for past 2 years. She has some difficulties of chronic anxiety that comes and goes and past divorce from verbally abusive and alcoholic husband. I'm 42 and she's thirty. I normally wouldn't date someone with that big of age difference, but we make it work. She's had vague symptoms for several years even before I met her. This past month she had 3rd brain MRI that is highly suggestive of MS, and each MRI shows white plaques that come and go. She needs spinal tap to ultimately confirm MS, but she's afraid to do it. Docs think she has relapsing/remitting MS.

    She is having symptoms of short term memory loss, depth perception problems (can't drive, totaled a car recently), right lower leg pain controlled by Gabapentin. The gabapentin is causing her to have water weight gain so she's trying to wean off it. Her docs think it's hot weather making a flare. Her docs advise her to get MS steroid injection drug, then oral MS pill; but she's afraid of liver effects.

    Her parents had to move out of town 3 hours away, she has a sister 2 hours north, I'm 40 minutes south of her. So, If we stay together, I will be primary caregiver i'm thinking. Lately she seems depressed, not communicative with me. I don't live with her. She's in nursing school.

    I love her and could've seen a long term future with her, but she's not sharing her feelings with me or supporting me very well as a boyfriend lately. My question is, what do I have to look forward to if end up marrying her from MS standpoint? I don't want to be a jerk and leave her with this new diagnosis, but I have needs too. I can't have a marriage based on me being a nurse to someone and not getting anything back. We love each other. I'm not perfect either and am somewhat co dependent and rubbed her wrong way with that.

    I just would like to hear from some experienced married people who care for MS spouses.

    #2
    Hi blue:

    Your heart is in the right place, but love isn't enough for you two to make a life together. MS is a progressive disease. So whatever is wrong with your relationship now is going to get 10 times worse as your girlfriend's condition progresses and she, of necessity, becomes even more self-absorbed. The need to become more self-involved in order to cope is what makes so many people with a chronic disease incapable of giving enough back to a spouse or partner, and the relationship is doomed. (The spouse's inability to cope with the change is a different discussion.) It's nobody's fault, that's just how it is.

    Anxiety and depression are hard enough for a spouse to live with. Add physical problems to that and it will be an ongoing, worsening challenge for you. Married people with MS make their relationships work by being mentally and emotionally healthy enough to be able to nurture a relationship and remain spouses in spite of their spouse also taking on a caretaker role. That's being a caretaker in addition to being a spouse, not instead of. Emotionally unstable people don't have the strength or capacity to create or maintain a healthy relationship on top of dealing with physical challenges.

    A marriage works when the person with MS is so wonderful in the eyes of his/her beloved that the beloved can't wait to marry that person anyway. That's apparently not what's going on with you and your girlfriend. If you aren't already committed 100%, then it's probably a good idea for you to question whether you should be in the relationship at all.

    And would your girlfriend be able to be a totally committed, participatory and supportive spouse if you hired a nurse to take care of her medical needs and you could just be spouses with each other? It doesn't sound like it. Everything you've said indicates that, if you marry your girlfriend, the chances are high that you will end up as a nurse and not a spouse.

    It's possible to love someone you're not compatible with or whose life journey isn't what you want for yourself. Love shouldn't be an excuse to prolong a relationship that already isn't working and isn't sustainable. You would be a jerk if you stayed in your relationship and then ended up resenting your girlfriend/wife and taking it out on her. You both deserve better than that.

    Comment


      #3
      Hi - I sympathize with your girlfriend. As someone who is newly diagnosed myself, it has been really difficult dealing with my emotions. I know I have been distant lately, yet struggle with trying to communicate my feelings with those around me. I don't know your situation exactly and the relationship between the two of you, but I imagine her distance might have something to do with the emotions she is feeling. She might not be able to articulate all her fears to you quite yet.

      I would hesitate to jump to any decisions about your relationship based on the impulsive fear of the unknown. The progression of MS is unpredictable - many people live very normal lives, especially with the new medications. Just because someone has MS, doesn't mean that they are going to need a full time caregiver. She too probably has fears about what would happen if her MS progressed and if she would allow herself to feel like she was to be a burden on you. Feeling like you need to ask for help can be really difficult and I imagine she is really thinking a lot about the relationship as well - I imagine she feels guilty to put you in a position that you are uncomfortable with. Of course, that's just me projecting - you really need to have a conversation with her about how she is feeling - understanding that she might not be ready to completely reveal every single fear and uncertainty she has.

      Comment


        #4
        I am the primary caregiver for my husband. We have been married for 20 years, and he was diagnosed 9 months before our wedding. I like the advice from sarabeach about not jumping to anything definitive until you both have the time to digest what is going on. My husband gave me an option out 20 years ago. That made me so angry. I felt like he was giving up before we really knew what was going on. Besides that, I really loved him, and I felt like we would be able to handle it together. It has not been easy, I would be lying if I said it was, but we have made it work.

        He was very introspective in the beginning, and didn't really talk about it a lot. For the first 10 years he really didn't have many symptoms, and the meds seemed to help keep him walking and able to do all the things he enjoyed. As the disease progressed though, he had to come to the reality that his MS was starting to take some of his life away. We both did. We now talk about it a lot and work together to research things to make our life easier, or to keep him healthy. Not always easy, but we do it together. It took a lot of talking, crying, listening, arguing, etc. we make it work. His silence in the beginning, and his denial, were things he had to go through. I had to patiently, and not so patiently, wait for him to accept what was going on. I just kept researching, and looking for paths we could try when he was ready.

        Sorry this is long. Take the time to think about what you want, try to talk to her and see what she wants. Fear is a terrible thing. MS can bring a lot of fear to the table. there are so many ways it can go, and sometimes your mind goes right to the worst case scenario. Get a diagnosis, find out a treatment plan, and then......see what happens. I don't do well borrowing trouble, I research, prepare, fail, research again....good luck.

        As an aside, my husband is now in a wheelchair, still works outside our home full time, and is the primary provider for our family. He is a fighter, and I love him for that. He is my hero and I made a great decision 20 years ago in not giving up on him, or us. Not always easy, but worth the fight.
        Husband dx'd with RRMS 1995-2007 SPMS-2007
        ~ Caregiver married 20yrs ❤️

        "11 For I know the plans I have for you,” declares the Lord, “plans to prosperyou and not to harm you, plans to give you hope and a future."~Jeremiah 29:11

        Comment


          #5
          You've gotten good advice so far. I agree that the future of MS isn't something that can be predicted. I've been one of the lucky ones so far, knock wood, 10 years out I'm still working multiple jobs and can jog 5 miles in just under an hour. I'm not patting myself on the back because I know it could change in an instant and there are definite signs of progression but more that I'm thankful I continued living my life and was able to resist the depression that attempted to swallow me up upon diagnosis. Hopefully your friend will be as fortunate.

          Like others said I'd also suggest taking some time before making a decision either way. Personally there is no way I'd even consider starting to date someone with MS but I have no clue what I'd do if I were in a casual relationship with someone who was then diagnosed. If I was married I'd stick it out but my husband knows that I have no intention of being anyone's caregiver so if either of us become unable to care for ourselves for whatever reason we are going to a nursing home. Good luck with whatever you decide.
          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
          Anonymous

          Comment


            #6
            Thanks

            Thank you everyone for the advice so far. I love my girlfriend enough to at least try to stay with her. She's not treated the best at times before this though. She's really afraid of the MS medications. Are side effects bad? You need to take them chronically? Maybe depends on symptoms.

            Comment


              #7
              Originally posted by blue588 View Post
              I love my girlfriend enough to at least try to stay with her.
              I'm going to quote that great galactic sage, Yoda: "No. Try not. Do. Or do not. There is no try."

              What exactly does "try" consist of? You're either committed to your girlfriend or you're not. If you're committed, there is no try.

              Try means you're already thinking about arriving at the point at which you're going to bail out. And if you're already thinking about when you're going to bail out, you aren't committed.

              Your level of commitment is important because it determines how much your girlfriend can really depend on you. You know that her anxiety is making it difficult for her to make sound decisions and take proper care of herself. And it will continue to be that way. So if you're going to be her caretaker, you can't tell her that you support her now and then walk out when the scenario gets old later.

              You can take some time to think about it as the situation unfolds. But at some point you'll have to decide whether you're in or you're out, and then act appropriately. Do. Or do not. There is no try.

              Comment


                #8
                Originally posted by blue588 View Post
                Thank you everyone for the advice so far. I love my girlfriend enough to at least try to stay with her. She's not treated the best at times before this though. She's really afraid of the MS medications. Are side effects bad? You need to take them chronically? Maybe depends on symptoms.
                Any medication can have side effects and unfortunately the warnings include everything but the kitchen sink so try not to let that scare you. Different people have different reactions and unfortunately sometimes have to try different medications to find the one that is the best fit. I'm so terrified of what I have seen this disease can do not taking medications wasn't a consideration. I was once again fortunate in that I have tolerated Copaxone well for the past 10+ years. The only adverse effects I have are craters/lumps of lipodystrophy in my thighs from the injections. My vanity is less important than my fear of this disease so changing for that reason wasn't ever a consideration and at 50+ no one really needs to be subjected to viewing my thighs anyway, lol.

                Whether or not it has been helpful I'll never know. Its possible I would have had an initial mild course even without meds but that wasn't a chance I was willing to take. The disease modifying medications are supposed to be used long term although they are often discontinued if the disease progresses to Secondary Progressive. I hope your friend finds the courage to consider the risks and benefits of starting a medication. I have no regrets other than the regret that I ever got this horrific disease to begin with.
                He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                Anonymous

                Comment


                  #9
                  Thanks again

                  Hello, everyone is right I need to make a committd decision this is serious thing. Girlfriend and I have been talking about getting married before this happened, known her two years. We talked today and she spends all her time in bed this past week. She's tried caffeine pills and it's not helped. She was a nurse's aid, but it was too physical for her. She tried a job at a bakery, but lost it this week due to being too tired to work.

                  It seems to me that's a reason to start MS medications? I'm confused when that point is. I'm in health field as a career and can understand and help her more than most others. She says she was told she'd have to start injections of some kind, then oral pill if she wants to start treatment. I think I'll need to be firm with her and recommend the MS drugs at least to help her with her current symptoms. She can't live like this in bed all day. She is a great person and has a lot to give.

                  Comment


                    #10
                    Hi Andy,

                    I saw this and couldn't help but want to respond. I was diagnosed several years ago right before my wedding. He was fully committed to me.

                    Yet I was newly diagnosed, and needed to process it all. I was distant, quite, cried and basically different. Our marriage fell apart, both our faults. Yet point is he too was confused why I was so distant, etc. I in turn let it define me back than. Whereas now I work full time, function am able to give to others.

                    Give her time to process this, it's kind of major. Also not everyone will MS winds up disabled. The path I think is unique for everyone.

                    Good luck


                    SWorld,

                    My name is Andy and I have been dating a lovely woman for past 2 years. She has some difficulties of chronic anxiety that comes and goes and past divorce from verbally abusive and alcoholic husband. I'm 42 and she's thirty. I normally wouldn't date someone with that big of age difference, but we make it work. She's had vague symptoms for several years even before I met her. This past month she had 3rd brain MRI that is highly suggestive of MS, and each MRI shows white plaques that come and go. She needs spinal tap to ultimately confirm MS, but she's afraid to do it. Docs think she has relapsing/remitting MS.

                    She is having symptoms of short term memory loss, depth perception problems (can't drive, totaled a car recently), right lower leg pain controlled by Gabapentin. The gabapentin is causing her to have water weight gain so she's trying to wean off it. Her docs think it's hot weather making a flare. Her docs advise her to get MS steroid injection drug, then oral MS pill; but she's afraid of liver effects.

                    Her parents had to move out of town 3 hours away, she has a sister 2 hours north, I'm 40 minutes south of her. So, If we stay together, I will be primary caregiver i'm thinking. Lately she seems depressed, not communicative with me. I don't live with her. She's in nursing school.

                    I love her and could've seen a long term future with her, but she's not sharing her feelings with me or supporting me very well as a boyfriend lately. My question is, what do I have to look forward to if end up marrying her from MS standpoint? I don't want to be a jerk and leave her with this new diagnosis, but I have needs too. I can't have a marriage based on me being a nurse to someone and not getting anything back. We love each other. I'm not perfect either and am somewhat co dependent and rubbed her wrong way with that.

                    I just would like to hear from some experienced married people who care for MS spouses.[/QUOTE]
                    Jen Dx'd 5/11
                    "Live each day as if it were your last"

                    Comment


                      #11
                      This is going to sound cold, but the first thing that popped into my mind after reading your post was "Run.....run like the wind!". Marriage is hard enough when both people are healthy and happy. Put something like an incurable, degenerative disease in the mix, and things go downhill fast. I speak from experience, as my wife has been suffering from MS for as long as we've been married (18 years). She had just been diagnosed a year earlier, so I went into it with eyes wide open.

                      Yes, we're still married, and have 2 awesome teenaged daughters, but it hasn't been easy. And it's continually getting harder. Through the years. I've watched her go from using no mobility aids, to needing two canes just to stand-up. If you have ANY doubt about this girl being your soul-mate, then I would seriously consider ending this now. She doesn't need you giving her hope now, and then a year or two later when things get worse, you bailing on her. I've stuck it out with my wife because she's a great person and doesn't deserve to be abandoned, but I wouldn't do it again! No way....

                      I love her, but I'm not enjoying it.

                      ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

                      Comment

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