Hi, my name is Donna. I’m the wife of a Multiple Sclerosis patient, Lynn, diagnosed in 2006. MSCaregiverSharing, my original blog site, was dedicated to telling the story of how I adapted to being both a caregiver and spouse to someone with multiple sclerosis. As part of that story; however, the fact that we had recently married and it was a second marriage for both of us, played a factor in how we adjusted. As is true with many second marriages, especially those with children, relationship issues associated with old baggage, got in the way of how well we dealt with the onset of a chronic health condition.
BEFORE WE MET
After my divorce, I shared joint custody of our two children, Sarah nine (9), and Daniel six (6) with my ex-husband. Thought a year since our divorce, conflicts continued between us related to the care and treatment of what I perceived to be signs of obsessive/compulsive and classic phobia disorders in our daughter. We had a significant difference of opinion related to the existence of whether she had an ongoing medical problem that needed treatment or if she had a behavior problem instead. Therefore, I spent a significant amount of my time supporting her.
My son participated in a variety of sports. Since we lived in a rural area, that meant a lot of time spent in the van going to and from sporting events. When my ex-had the kids, I worked a second job as a home health nurse to make ends meet. I also was a girl scout leader, taught Sunday school, sang in the choir at church, attended all the children’s special events and had a very demanding job that kept me busy every minute I was not with the children.
Being a single mom with two young children and working full time, my opportunities to meet someone were limited. Why I thought I had time to date was beyond me, but I was lonely. Friends suggested I try social media to screen potential dates. I did, and it worked. I met Lynn by answering his personal ad in Style magazine.
I was drawn to Lynn’s ad because he spoke of how important family was to him, and he shared that he was a Christian. I called the number in his ad, and our first phone call lasted about two hours. We seemed to hit it off well, so we agree to meet to see if the chemistry continued in person. We met at a local shopping mall where he finished his Christmas shopping (on December 23 which should have told me something about him) for his son. We discovered that his son and my son were only three months apart in age and that we had a lot in common. I found out he played guitar and sang in the church choir. My interest steadily grew.
AND THEN WE MARRIED
Lynn and I dated for a few years before getting married. We both were scared to try again and were reluctant to blend our families. Plus, we were both very independent! To be honest, I tried to find reasons not to get married because we were very different from each other. I was not sure we were going to work, but each time I tried to get the courage to break up, I would first pray about it, and God always sent me a message to say, “Stay with it.” So, I did.
Still afraid I might be making a mistake, we moved forward with the wedding on October 11, 1997. At the wedding, Lynn’s son was bitterly unhappy throughout the service, and by the time we left for our honeymoon, my son was crying as well. I wondered throughout the ceremony if I was crazy as I looked at the children and then thought of our differences, but God had a plan.
As predicted, our first few years were challenging. Our parenting styles were decidedly different. Lynn did not operate on a schedule, would not commit to any specifics on anything, and did not like structure. I crave structure, need closure, and don’t like waiting to the last minute to do anything. To say our styles clashed would be an understatement. Our marriage survived and became stronger, however, because we had committed it to God and each other and would not go back on that promise.
CAREGIVING FOR MY DAUGHTER
During this time, my daughter continued to need a great deal of support. Often, I spent more time with her than with Lynn. I found it a challenge to give both what they thought they needed from me. At times conflicts arose over whose needs came first. Lynn was very understanding that Saran needed a great deal of help through her struggles, and without that encouragement, my ability to support Sarah would have become compromised. However, her needs were so great at times that he would feel neglected and wonder if I even cared about him at all. It seemed I was always putting her first because her needs were always greater, yet he was my husband. It created an issue between the two of them for a while as well.
FINDING WAYS TO BE TOGETHER
One of the ways we worked at developing our relationship was through our church activities. Lynn and I both liked to sing. He was terrific at it, and I just wanted to do it. My talent was drama, and when our church began a 17th Century Dinner Theater, I jumped at the chance to become involved.
Since Dinner Theater involves singing both Lynn and me participated. We both loved it and made many good friends. From that experience, we expanded our participation into other roles at church – Lynn joined the praise band, and I started working with a drama team. We both were still in the adult choir, and both also started playing handbells. I became involved in a support group, Discover Freedom, whose purpose was to provide encouragement and support to those fighting the challenges of addiction or who needed a group to help them find freedom from whatever struggles they were encountering. Lynn and I were very busy, and the activities were bringing us closer together while also creating a solid support group for us at our church.
THEN MS STRUCK
During this time, Lynn began to notice his foot-dragging after he would run (he was devoted to exercising and tried hard to stay in shape and work out every day). The “foot drop” effect was randomly causing him not to pay much attention until his right leg started bothering him as well. It would occasionally seem to give out on him.
I knew his father died in his 40’s from complications of MS. I asked him if he thought his symptoms could be related to MS? He said he had asked the doctor about MS, and the doctor did not believe his symptoms were MS-related. Indeed, the physician prescribed physical therapy, and his foot got better.
However, the foot weakness kept coming back, and the physical therapy was not helping it improve. I mentioned MS again, and Lynn kept denying that was the cause. One night, I saw Lynn testing the movement differences for the fingers of his two hands. He would wiggle the fingers on both sides, but one hand was moving much slower than the other. That alarmed me. I confronted him with what I had seen. He denied it was anything of concern, but having a nursing background, I knew something neurological was wrong. I feared MS or some other neurological condition.
HE GETS DIAGNOSED
I was a little frustrated that his doctor wasn’t finding out what was wrong with him. Plus, I was frustrated with Lynn, too, because if a doctor did ask him how he was, he always said, “If I was any better, I couldn’t stand myself.” I knew he was not sharing all his symptoms, so I told him that from then on, I was going with him to all doctor’s appointment. I knew I had to go if I wanted to know what was shared and what was said.
His next appointment was with his cardiologist (He has mitral valve prolapse). His heart seemed fine, but his doctor asked me if I had any other concerns. I told him, “not about his heart, but he’s got something wrong in his upper back.” He asked me who I wanted Lynn to see. Fortunately, he was able to get us the appointment I wanted, and Lynn was scheduled to see a neurosurgeon. I thought if it wasn’t MS it had to be a problem in his spine. It might not be in his lower back since the symptoms were appearing in his hands. The neurosurgeon agreed with me and ordered a head and neck MRI.
After having the MRI, Lynn and I went to the beach for our anniversary. On the way back, we got the news. Lynn had MS. Though I expected it, I still felt like I had received a kick in the stomach. He, of course, felt worse. He had seen what MS did to his Dad, and he didn’t want his son to see him reduced to the disability in the same way. He cried outside, unloading the car. I cried inside as I unpacked the bags. Then, we cried together. So, began the testing, the treatments, the years of shots, and the steady decline in his abilities.
The children have now grown up and are out on their own. Our daughter married a very supportive young man who took my place in caring for her (and does a fantastic job of it). Both boys are now married as well with wonderful, caring wives. We are blessed beyond measure with each of the choices our children made in spouse selections. We “socially” adopted an adult friend of our daughter’s, whose parents are no longer living and asked her to become part of our family in 2018. Of greatest joy; however, is the addition of all our grandchildren. We have four biological, three from our adopted daughter and possibly two more adopted children coming shortly. Nine grandchildren! What joy!
His neurologist says Lynn has Primary Progressive Multiple Sclerosis, the rarest form of MS. Since his diagnosis in 2006 he has gone from being very healthy and able-bodied to being in a powered wheelchair and unable to do very much without assistance. He has a neurogenic bowel and bladder and needs assistance with all activities of daily living.
For many years I worked remotely and balanced a full-time job with full-time care responsibilities for Lynn. Now, I am retired and am fortunate to have a Monday through Friday caregiver to help me provide Lynn’s care while I work on this website as a part-time job to supplement my retirement income. It’s still a 24/7 responsibility; however.
The purpose of this blog is to share with you the challenges and joys I’ve experienced as a caregiver. They are often raw and heartfelt and very personal, but sometimes it helps to relate when you feel alone. I hope you find some support through this sharing.
Feel free to comment with your experiences as well.
MS Caregiver Donna
In my blog, I sometimes mention medical options, give information about treatments or medications, or explain what I know about a condition, etc. Information provided is based on my limited knowledge of the topics presented and how they apply to Lynn or me. Please do not consider this medical advice. Everyone’s situation is different, and the only way to make sure you get what you need for your case is to have your healthcare provider evaluate you and develop a treatment plan just for you. Therefore, please keep in mind the opinions mentioned here are strictly my own. The opinions do not represent anyone other than myself and are not a substitute for your doctor. Thanks