Caregivers Belong to a Family
Caregivers do not live in isolation. They are part of a family. In my case, I’ve been married twice and have two biological children, one stepchild, and one adopted adult child. So far, we have nine grandchildren. My father is alive and ninety years old as of this writing in Feb. 2023. My mother died a few years ago of cancer. I have two brothers; one lives an hour and the other five hours away. My husband’s mother died within the past two years. He has one sister who is married and two married uncles living close to us. Other than a few other nieces, nephews, and cousins who live in the area, the above describes my current family. They are our support system, the ones who matter the most to us and influence our decisions the greatest.
Caution – Caregiving Can Destroy a Marriage
For some caregivers, the family includes non-blood relatives, i.e., significant people who are family by choice, not biology. They are just as much family as those born through nature. Whatever family means to you, for us, our inner circle of the “family” began with myself and my two children and Lynn and his son. Both adults were survivors of divorce and carried significant baggage. Though many were unknown at the time, all three children had scars. Bringing this family together was challenging enough, but when I added the additional stress of caregiving to the mix, it nearly destroyed the union. I’m sharing our story to help you understand the need for grace and open communication in relationships that include caregiving. You may think it’s not an issue, but if you do not consider how it’s impacting your relationship, there won’t be one in the end.
I met Lynn by answering a personal’s ad in a local paper. I didn’t have time to meet anyone because, as a single Mom with two children ages nine and six, I was busy being a girl scout leader, Sunday school teacher, chauffeur to sports practices and events, and tutor in between working a second job, keeping up with a demanding first job, and managing a household. Furthermore, one of my children had a serious anxiety disorder that required a significant amount of my time to help her cope with life. Though I shared joint custody with my ex-husband, all responsibility for time missed from school, doctor appointments, and illnesses fell to me to handle.
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 relating to the care and treatment of what I perceived as signs of obsessive/compulsive and classic phobia disorders in our daughter. We had a significant difference of opinion related to 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.
Answered Personal Ad
I decided I wanted to meet someone to date when I had free time. Lynn’s ad drew my attention because he emphasized his love of family and Christ. I called him, and we talked for over two hours the first time we connected. After that, we decided for him to do some last-minute Christmas shopping, allowing a brief opportunity to check each other out. We both passed scrutiny by the other, and our dating lives began. Having been burned badly in our previous marriages, neither wanted to jump into wedded bliss too soon.
Lynn Popped the Question
After dating for a few years, Lynn popped the question (very romantically), and I agreed. I admit I was very reluctant, however. Scared to try again, we knew blending families and dealing with past scars would be difficult. Furthermore, I couldn’t see how I could split my time between helping my special needs child and giving Lynn, my new husband, the attention he needed. To complicate matters even more, we were both fiercely independent. So, I tried to find reasons not to marry him. But
I was not sure we could make it work. So, each time I tried to get the courage to break up, I would pray about it. To my surprise, God always sent me a message to say, “Stay with it.” So, I did.
Afraid to say, “I do,” but trusting God that He knew best, I went ahead with the wedding on October 11, 1997, scared to death; I was making a mistake. Lynn’s son reinforced my fears when he acted bitterly unhappy throughout the service, as did my son when he cried as we left for our honeymoon. Thinking of all our differences and challenges, I felt sick to my stomach. Fearful of what lay ahead but determined to trust God’s plan, we started our journey as a family of five.
Challenging Early Years
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 until the last minute to do anything. To say our styles clashed would be an understatement. However, our marriage survived and became stronger because we committed to God and each other and upheld our promise.
During this time, my daughter continued to need a great deal of support. Often, I spent more time with her than with Lynn. It felt like a no-win situation for me to try to give them both what they wanted from me (80%, at least, of my time)
At times conflicts arose over whose need came first. Lynn understood that Sarah needed a great deal of help through her struggles. His encouragement gave me the ability to support Sarah without compromising her well-being. However, her needs were so overwhelming at times that he felt neglected. He began to wonder if I cared about him at all. I was always putting her first because her needs always seemed greater. However, as a newlywed husband, Lynn felt it only fair that he should receive priority on occasion, too. The battle over who got my attention began to create resentment between them.
Finding a Solution
Caregivers must recognize when caregiving takes over their lives, excluding all other relationships. If they don’t, they are at risk of losing them. Otherwise, without intervention, they will find themselves alone. When the signs show, talk about how you feel about your relationship. What is or is not working?
More Caregiving Needed
God’s plan was for us to stay together to grow as a couple and gain a strong foundation through struggling in those first years. Through those struggles, we learned better communication and support skills and how to unite to deal with issues involving the children. All these challenges helped prepare us for Lynn developing Multiple Sclerosis, creating the bond we needed as a family.
During this time, Lynn noticed his foot-dragging after running. The “foot drop” effect was randomly causing him not to pay much attention until his right leg also started bothering him. It would occasionally seem to give out on him.
Claimed Doctor Ruled Out MS
Knowing that his father died from complications of MS while in his forties, I asked him to consider if his symptoms might be MS related. He said the doctor ruled out MS and believed it was nerve-related in his hip. A prescription for physical therapy did result in improvement, but the problem returned in a few weeks.
Then, one night, I saw Lynn comparing muscle movements between the fingers of his two hands. He would wiggle the fingers on both sides, but one hand moved much slower than the other. Alarmed, I shared my observations and demanded that he make an appointment with a neurologist. He dismissed my concerns again but agreed I could attend his next medical appointment.
I knew Lynn. If anyone, including a doctor, asks him how he feels, he always answers, “If I was any better, I couldn’t stand myself.” Therefore, I strongly suspected he was not sharing all his symptoms with his doctor. Thus, I insisted I go to his next medical appointment.
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 (since it was his fingers not moving in unison).” After we discussed my concerns, he agreed an evaluation was appropriate and he needed an evaluation.
Finally, Get Medical Evaluation Scheduled
The cardiologist promptly intervened to get him an appointment with the neurosurgeon I requested. I asked for a neurosurgeon rather than a neurologist because Lynn refused to think it might be MS but would consider a slipped disk. After hearing our story, the neurosurgeon ordered an MRI without giving it a possible diagnosis.
We left to celebrate our anniversary at the beach immediately after the MRI. 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 didn’t want his son to see him reduced to the disability similarly. 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.
Spouse Caregiving Begins
So began our journey toward caregiving/care receiving as husband and wife, and what a journey it has been. Though physically and mentally difficult, God used Lynn’s medical condition to unite us as a couple. Where before we were two independent people joined in a marriage, we are now almost one person at times. Being constantly together, we found that humor was our best weapon to survive the fateful moments when everything went wrong. Better to laugh at being stuck on the floor, naked, in a position that seems impossible to untangle with just the two of you at home than to cry about it. The laughter gets you through the hard times, as do the tears.
Sometimes tears can’t be avoided, like when I hear a recording of him signing. Lynn was a phenomenal singer and guitarist. He has a recording on Youtube called Steigleder Project that displays his talents. I cry when I hear it because I mourn what he’s lost. As you read through my website, you’ll hear more of our story—the good, the bad, and always the truth.