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Remember Whose Life You Are Living

As a caregiver, I want to help make my spouse’s life better. I want to help him find answers to his medical questions, assist him in doing the things he cannot do, and help him in whatever way I can. As his MS has progressed over the years, his need for my assistance has expanded to the point that he is now entirely dependent on me for everything.

MS improved our marriage

When we first were married in 1997, Lynn and I had difficulty bonding because we were both very independent. Our marriage struggled because we did not “need” each other.  Having each been married previously, we were capable of managing homes and children without partners; therefore, adding one to the mix required significant adjustment on everyone’s part. Continue Reading at: https://multiplesclerosis.net/caregiver/choice-control/

Help with Difficult Conversations

Have you noticed how difficult it can be to have a sensitive conversation with another person without being misunderstood? Why is that?

Difficult conversations

  1. Today our primary mode of communication seems to be through text messaging or tweets. We use short abbreviated bursts of information delivered remotely.
  2. Texts and tweets allow us to keep our distance from each other. When we text, we send the message to an unseen recipient who experiences an emotional reaction we don’t have to acknowledge.
  3. Individuals fear to share how they feel about issues due to concerns about being ridiculed, rejected or embroiled in conflict. In today’s society, we do not know how to cope with these emotions; therefore, the fear of them leads us to avoid them if at all possible.
Continue reading at https://multiplesclerosis.net/caregiver/help-difficult-conversations/

Hope or Regret: The 4-Wheel Drive Powerchair Debate

Powerchair
I know you’ve heard the phrase, “One person’s junk is another one’s treasure.” I have a new one for you: “One person’s hope is another one’s regret.”

Four-wheel drive powerchair

We have a $12,000 monstrosity my husband calls his four-wheel drive powerchair. We bought this large paperweight in 2009 but never used it because it came programmed incorrectly. Advertised as able to climb stairs, speed through sand, and out-maneuver muddy driveways without a hitch, the Predator is a basic, metal framed chair with no padding or seat, equipped with headlights, turn signals, a horn, and the ability to raise or lower its height. It’s very ugly. However, at the time, similar models were not available for the stated price in America, and Lynn desperately wanted a way to be able to go fishing. Continue reading at: https://multiplesclerosis.net/caregiver/hope-regret-powerchair/

We Survived Christmas, But Just Barely

Christmas is now officially over and it’s with mixed emotions that I say goodbye to it for another year.


I love the Christmas holidays. I decorate everything in sight. Since we don’t go out very much, we miss most of the festive sights so I bring it to us instead. I can’t outline the house in lights but I put up trees sparkling with white lights all along the front and in front of them I have bunches of red and white poinsettias grouped every two feet with stick trees lite in white behind them. Lots of garland can be seen draped on porch rails with white lights running throughout. Electronic deer and a snow family grouped among trees with the Holy Nativity established in the place of honor at the entrance to our driveway greet visitors upon their arrival.

Yes, my house could be on the tacky light tour if we had one in our neighborhood but it is how I enjoy the sights of Christmas being limited in my time away from home.


Continue reading at https://multiplesclerosis.net/caregiver/we-survived-christmas-but-just-barely/

How Can I Help?

I get a lot of offers to help; some sincere and others just being polite. What I have found is that people want to help but they don’t know how and realistically, many have their own problems and challenges so they can’t help in a way that involves time or money.  While I really could use the help, I don’t want to put anyone out so I usually don’t ask BUT, if you ask me if you can do something for us, I may very well say, “yes.” Here are some ways you can help.


Inexpensive and limited time commitment:
continue reading at: https://multiplesclerosis.net/caregiver/caregiver-perspective-can-help/

Marriage?

When Lynn and I were dating, I knew that his father had only lived to be in his forties and that he died from complications of MS. Having a medical background, I had a vague, general knowledge of the condition but primarily just enough knowledge to know that it affected mobility and the eyes and I had had a few employees make accommodate requests related to memory.  I knew that genetics was a factor, but not an absolute, in determining if he would also suffer from MS.  I also knew that while Lynn had his vises, he was good about what he ate and he exercised regularly; so, in my opinion, he was more likely to have complications from his smoking than he was from having MS.  I seriously considered all these factors and went into my marriage with full knowledge of what I might encounter.  I actually was very reluctant to get remarried, not due to the MS, but due to the fact that marriage was so difficult and even if you tried your best, you can’t control the other party. When I finally decided to marry Lynn, I went into marriage with a full commitment to staying married for sickness or health, richer or poorer, etc. I had survived one divorce and didn’t want to go through another.  In other words, my fear was not of the MS but of the relationship difficulties itself.
And, I was right to be concerned.  Those first few years were VERY difficult trying to blend two families; taking two very independent and totally different personalities and trying to learn how to compromise and adapt.  We struggled.  We had counseling.  We became distant and we sought and found ways to become closer.  We had to work at it; it did not come naturally to either of us. We were both very afraid of being hurt again and therefore, afraid of totally giving ourselves to the marriage. After all, we both knew how it felt to have loved and lost; but throughout it all, whether or not he might have MS was never a factor.
Then, one day I found him comparing how fast he could wiggle his fingers on one hand as compared to the other.   I could see the difference.  He had seen a physical therapist about occasionally having “drop foot” after exercising.   He had complained of numbness and some weakness in his left leg which was attributed to sciatica.  I asked him during those occurrences if he had mentioned his family history of MS and he said that wasn’t what it was and his doctor had his family history.  I knew then; however, that he had MS.  My daughter, who was in nursing school at the time, and I talked about the fact that we both believed he had MS.  Even his son, suspected it but Lynn was in denial.   I finally got so frustrated that I confronted him about my concerns and demanded that I be allowed to go with him to his next appointment because he would never give me a straight answer about what was discussed.
As it turned out his next appointment was with a cardiologist (he also has mitral valve prolapse).  The doctor asked him how he was doing; then, he asked me.  I told him Lynn’s heart was fine but something was wrong with his nervous system.  Lynn shot me a look of daggers but the cardiologist promptly set us up with a neurosurgeon because at the time, I thought it was possible it could be a disc issue (since he said MS had been ruled out by his doctor already).  The rest is history.  Blood work was done; as was a MRI and a lumbar puncture, and as we were driving home from an anniversary visit to the beach, he got the call that said it was MS.
I already knew in my heart what the diagnosis would be and I think Lynn knew but didn’t want toknow. However, actually hearing it still kicked us in the gut.  I have to be honest that fear of what was ahead did cross my mind. Lynn and I were distant emotionally at that time because he would not share his thoughts or his life with me.  He kept me at a distance.  I think he was afraid I would leave if he got MS.  His parents had divorced while his father had MS and though I don’t think the divorce was due to MS, it probably played a part in it.  However, for us, it had the opposite effect.
I became Lynn’s advocate.  I shielded him from too much information (at his request; he still wanted to deny as much as possible); I did all the communication with the doctors and healthcare facilities.  He finally recognized that he needed me and he let me in and though that process we are closer now than if he had not had MS.  If he had not been diagnosed with MS, who knows if our marriage would have survived?   I like to think it would have because we are both Christians who are totally committed to staying together but I’ve learned you can never say never…about anything.
 
continue reading at: http://multiplesclerosis.net/blog/marriage/