When my role as a caregiver became more demanding, I found myself acting more as a caregiver and less as a wife. In the early stages of MS, Lynn still worked, drove himself around, completed projects, and helped me with things I needed. He shared in the responsibilities of the house and we shared our lives as a couple. While he needed some assistance, particularly at night when he was most tired, he was independent in his own care and was still functioning as a husband, making decisions about our future, making sure maintenance of our home and vehicles occurred, taking measures to ensure our safety and securing our resources.
Then came the day he was home alone, fell, and could not get up. He was stranded for almost three hours lying next to a heat register, getting overheated, alone and totally helpless. It changed him. After that, he was afraid to be alone. He didn’t want me to leave the house and was even reluctant to let me leave if someone else was with him. He began to rely on me for everything. He was afraid to try walking with his walker anymore unless I was right there. He became very depressed and struggled with the realization that he was becoming or had become DISABLED. It was at that point that our roles changed. I became his caregiver and he became my “charge.”
Within a few months after he fell, his condition deteriorated to the point he was hospitalized and was in and out of the ICU during three separate hospitalizations. By that point, I was responsible for everything–all decisions; his protector; his liaison with the outside world; his life-extension. When we left the hospital after the first admission, we left with him as my patient and only an essence of my spouse.
That was 2 1/2 years ago. He’s much better now, physically and mentally, but the aftereffects of that time remain. He has use of only one arm and hand which becomes essentially no use of limbs by night fall. I position his body for him so that I can dress him; I manually move him from bed to wheelchair; I position his arms for comfort and his legs/feet go into his peddler so when his spasticity gets uncomfortable, the movement can relieve that. He does not have the strength of movement even when he does move his limbs for effective action. He cannot even scratch an itch or wipe his eye of sweat. That being the case, when the person you love cannot left their arms to hug you or tighten their muscles to embrace you; how do you maintain intimacy?
We are fortunate in that Lynn’s mind is still very active and engaged. Though we can have no physical relationship, we do have a spiritual and interpersonal relationship. We are still able to enjoy a television show or good movie together. We discuss the news. We share in the joy of parenthood and now grand-parenthood. We can still send each other special smiles and looks and we still strive to support and encourage one another. We still have companionship and for us, that has allowed us to continue as a couple.
I have talked to others whose spouse has withdrawn from being engaged with the events around them or who can no longer remember the here-and-now but instead lives in the yesterdays of their minds. For them, the person they loved no longer exists in the presence other than as a responsibility. They still love their spouse but the person who “was” no longer “is.” Therefore, they carry on in a one-sided relationship becoming the caregiver who functions not as a partner, but as the one responsible for everything that needs to be. That type of relationship can be very lonely. Though someone else is present in the same home there is no companionship; no sharing; no refuge from life’s challenges by being able to unburden their load with someone else. They now have to receive their satisfaction in the relationship though the knowledge that they are making their spouse’s life better, their life expectancy longer, their potential for greater recovery an option.
I am very thankful that I am not at that point yet. I dread the day that may or may not come when Lynn doesn’t recognize me or where we live. I know if that day occurs, the burden of caregiving will seem greater unless I prepare emotionally and mentally for what lies ahead. It’s possible Lynn will not develop memory or cognition problems but many MS patients eventually do. However, for now, I’ll feel blessed that he “has all his oars in the water,” and I send up prayers for my friends who are not as fortunate.