When your Spouse Has MS: Thoughts on Caregiving
December 31, 2007
As he carefully manipulated my arm and shoulder on instructions from my physical therapist, I searched his face for signs of resentment or frustration, but saw none. Despite my best efforts the pain was evident on my own face, yet he did what was necessary. He is my husband, my best friend, my partner in life. He is also my on-again, off-again caregiver. Therin lies the crux. It seems there is a third party in our marriage.
Symptoms of MS began showing up in not-so-suttle ways just months into our relationship. Always fiercely independent, I found myself needing help more often than ever before. When it appeared temporary, it wasn't a monumental issue. As months passed, symptoms worsened and diagnoses followed. When it became clear that the difficulties I was having were not temporary, the emotional tug-of-war pitting dependence and independence against each other began.
Jake saw me through the physical and emotional process of diagnosis. We were not yet married and he had a decision to make. He could choose to live with multiple sclerosis or not. Being a very thorough man, he researched MS in detail and considered the facts. Whatever process he used to come to his decision he kept largely to himself. He chose to marry me and with that, to take on MS! I can claim no such bravery because I had no choice to make. MS was simply in the cards for me. That reality does not escape my notice.
It is very important to my female ego that he thinks of me in a romantic, loving way and not as his patient. Having Relapsing/Remitting MS, I am able to maintain my independence much of the time and require only a supportive spouse. At other times, he must take over driving and extra chores as more symptoms become severe.
When I am in the throes of a full-blown relapse, he steps into that role of caregiver. At these times he remains close at hand, checking in on me when I'm too quiet, when I'm in the shower and lending a hand whenever needed throughout the day.
It takes a steady hand to guide this ship. I am very fortunate to have a husband who is extremely intuitive. He keeps pampering to a minimum. He skillfully helps just enough to get me through, yet not so much as to keep me dependent. For my part, I put forth great effort to fend for myself as much as possible.
Living with a chronic illness, it would be easy to become self-absorbed, but my MS does not mean that Jake is without his own problems, health or otherwise. He deserves the attention, support and love of his wife. I never miss an opportunity to show my appreciation, and that he is so much more than the partner of a person with MS.
We don't know what lies ahead any more than any other couple but we tread carefully. It's a very fine line between caregiver and spouse and we must be ever vigilant so that they may continue to peacefully co-exist.