Living with multiple sclerosis requires constant challenges for the patient and caregiver
Living with multiple sclerosis is challenging both for the person directly affected and their family members: they all must cope with the countless unknowns of this chronic, progressive disease….Read more.My wife has been diagnosed with relapsing-remitting multiple sclerosis (RRMS) for many years. I do everything I can to support her. But seeing her struggle is a challenge for me. When she feels defeated, I also feel defeated. Sometimes I wish I could have the disease in her place …
I stay close to her and I support her, even when it is physically and mentally challenging to help her. Every exacerbation affects part of her nervous system, leaving her more compromised. I try to give her the strength she needs to pick up the pieces. We do not ignore the presence of the disease in our relationship, but do everything we can to prevent it from having the upper hand.
Do not give up on children and family
Our biggest fear was that we could not have a baby. The doctors told us MS does not rule out having children. But we were advised it would be best if the pregnancy took place while her MS was in remission. We were also told to ask her neurologist if it’d be safe to stop her medications.
My wife was able to get pregnant. We were extremely fortunate, as her MS stayed in remission during her pregnancy. She enjoyed nine beautiful months that ended with a Cesarean birth. For the first three months, our lives almost felt normal. We enjoyed every moment of being new parents. She was even able to breastfeed our baby, which was so important for her happiness.
But after three months, she had a terrible relapse. She had to resume her medications, and her doctor told she’d have to stop breastfeeding because of the drugs. I’ll never forget what she told me that day… she said that for the first time, she truly felt sick. The disease had forced her to give up something which was so important to her. We both cried that day. I could not cope with the deep pain my wife felt, about having to give up this important part of being a motherhood.
Since then she’s experienced more relapses, more hospitalizations, and with them, many more moments away from our child, and more moments of despair and pain. Her crises are severe, the drugs bring benefits but also side effects. She was unable to walk, unable to follow our baby as she learned first to crawl and then to walk. It is painful to think of how devastated my wife was during this time. She had to stay in the hospital, far from me and from our child, for weeks.
As the relapses and hospital visits grew lengthier and more severe, my wife spiraled into a deep depression. She had guilt over all the tasks she could not accomplish and all the things she had to miss- she couldn’t play with our daughter, chase her in the garden, or teach her how to ride a bike. I felt a desperate need to help. One of the best things we did during this period was have an honest, though painful, talk about what was important for our family and how to do everything needed for our daughter’s well-being. I took on more parental roles that my wife was unable to carry out. I taught my daughter how to ride a bike. I would have taught her how to fly, if I could.
Stay connected and your effort will be reciprocated
It was not easy to re-organize my life. Though I always tried to pitch in around the house, in truth, I took my wife’s work for granted. I never realized how much she did to keep our house in order: shopping, budgeting, paying the bills, cooking and cleaning. The more tasks I took over, the more exhausted I became. I had to give up many things, even though I was the well spouse. Many of my friendships withered away, even close ones, because I had no time to play a round of golf or go out for a beer. I had less time for my hobbies, simple things like wood-working I used to spend a few hours on each weekend. I could feel my health declining, and I started to have trouble sleeping at night. Worst of all, I couldn’t shake the guilty feeling that no matter what I was doing, it was never enough, or that I was making mistakes my wife never would’ve made.
It was actually my wife who first told me I needed help. She could tell I was getting exhausted and she knew I was having sleepless nights. We had another one of those honest and painful conversations, and she begged me to seek out support. Practical, psychological support, so I could get a grip on my new role. For too long I felt like I was juggling all the expectations of being a husband and a father, now a caregiver. Simply put, I could no longer do this all alone.
The best thing I did at this point was decide with my wife that I’d come clean with our friends. I told our friends about the disease. They really stepped up to the plate and some of them agreed to help out a few hours a week. This was invaluable, as I couldn’t stop working, and needed the security of knowing we had a hand around the house, so I could stay focused and keep my job.
Be simple and positive to explain MS to your child
When my daughter turned three and became more aware of things, we had to tell her about the disease. She became afraid every time her mom was having a bad day, and kept asking me if she was going to die. Then she became afraid that she might get sick, too. It broke my heart. My wife and I decided that honesty was the best policy. We taught her about MS and how it affects her mom, and how her mom has to compromise, to limit herself from certain activities depending on the weather or her energy level. We taught her that the mood swings her mom sometimes had weren’t her fault, but the fault of MS. Most of all we taught her that MS could not change her mom’s love for her. I have been so proud to watch my daughter grow up and see how well she handles everything. She finds different ways to spend time with her, even lying down in bed, or on the couch next to her, listening to music or audiobooks together. They have an unbreakable bond. I have noticed with pride that she is wise beyond her years and more compassionate than her friends. I never thought I’d say this, but in many ways the MS has made her a better person.
As time went on, things seemed to get, if not easier, than less terrifying and daunting. It felt like we’d been training for a marathon. When an exacerbation happened, my family found ourselves reacting with a calmness and strength we didn’t know we had. But the most important thing was being honest with our friends and family, and learning to accept their support. This was hard for me at first, I wanted to do everything on my own. But it wasn’t the right thing for my health. Now I feel healthier and better able to deal with things, and because of this I can help my wife better.
Without adequate support and the opportunity to rest, the physical and mental health of a caregiver can be at risk. This situation is not good for anyone and the caregiver’s health can worsen to the point where they can no longer take care of their loved one. We are here to help you.