With Valentine's Day around the corner, florists are blowing up the airwaves, hawking red roses and chocolate assortments. I have always been jaded about the big V, so lord help my string of boyfriends. Yes, I like flowers (lilies, preferably) and chocolate (dark, 80% please) but Valentine's Day just plain irks me. I want friends and family showering each other with year-long displays of love and care. So while this week may or may not be the most appropriate time to rant about the intersection of relationships, chronic illness and caregiving, I am doing it anyway. Brace yourself.
Let's start with this fun fact: Relationships are hard.
Our relationships usually start off with our parents or guardians, followed by the neighborhood children, kids at school and our first loves. As we mature, develop adult relationships and run our own lives, we still depend on our friends and partners to meet our various needs. To this end, we create an inner circle of trust, believing that this select group of people will stand by us, through thick and thin. Sometimes they actually do. Too often, however, when the going gets tough, the inner circle gets going. Away.
When a loved one becomes ill, life changes radically. When my mother had a few months left to live, for example, nothing else mattered. My mother had my undivided attention, around the clock. This change in our relationship did not leave a whole lot of room for my then-boyfriend, and my inattention to him quickly became an issue. I was too tired to be intimate; too tired to cook, clean, smile or play; and otherwise too tired to maintain any sense of normalcy, any sense of what we had prior to my mother's diagnosis. I wanted my boyfriend to understand my situation, be empathetic, step up and take over the responsibilities that I could no longer manage -- like grocery shopping, walking the dog and doing our laundry. After all, we had been living together. We had made a deal to support one another.
It didn't happen.
The same held true for some of my closest friends: We were in our early twenties, and none of them had a care in the world, other than getting laid, drinking beer and squeaking by in college. My life-and-death problems simply were too much for them to handle; and so, as time slipped away, so did many of these friends.
The more I speak with other caregivers and care recipients, the more I find that my situation was not unique. When someone is diagnosed with a chronic illness, the dynamic of all relationships change at best and become minefields at worst:
• The care recipient, suddenly dependent, may feel guilty for having to depend on others physically and financially. She may end up lashing out at those who are closest to her and doing the most for her.
• The care recipient's friends and family members may feel jealous of the care recipient -- irritated by the uneven distribution of time, attention, and resources -- and they may take out their feelings on the care recipient.
• The caregiver, suddenly revolving her life around the care recipient, in turn may resent friends and family members who are not pulling their weight or otherwise demonstrating compassion and understanding. She may become short-tempered with anyone not stepping to the plate.
• In the case of role reversal -- such as a child caregiving for a parent -- the caregiver and care recipient may lock horns in an ongoing power struggle, leading to explosive tension in the relationship.
• Friends and family of the caregiver and care recipient may feel overwhelmed by the daily drama of chronic illness and may feel resentful toward the caregiver/care recipient, for having changed dramatically, for being a party-pooper or for being inadequately available. Frustrated and feeling in over their heads, they may take off.
Rick Foster, a copier technician and part-time comedian in California, had first-hand experience with several of these examples. After Milla Gauzner -- his girlfriend of nearly a decade -- was diagnosed with metastatic breast cancer, she required Foster's devotional care for several years. Having been an active woman prior to her diagnosis, Gauzner became very demanding toward the end of her life. "She was trying to maintain a sense of independence," Foster recalls. "She sensed she was losing control."
With the help of only one other individual, a college friend of Gauzner, Foster quickly found himself balancing a full day's workload with the all-encompassing task of caring for his love. "I felt pretty abandoned," says Foster. "People didn't understand how to give something as little as cutting my lawn. They didn't get how giving so little can be so big. "
Paula Kamen -- author of All In My Head, former blogger for The New York Times, and chronic daily headache sufferer for the past 20 years also had first-hand experience with chronic illness changing everything: "I was 24 years old when I began having chronic, daily migraines," Kamen recalls. "It made dating difficult. I never knew how I was going to feel; I didn't want to cancel too many times; and I never knew when I was going to tell my date about my condition."
Now happily married, Kamen advises that healthy relationships are all about balance: "I am mostly self-sufficient these days," she elaborates, "however, my husband knows I have a tendency to not feel well in the morning, so he takes care of the kids in the morning. At night, when he is exhausted from work, I do most of the caring for the kids."
While I wanted to make my outside-the-care-group relationships work during the time of my mother's illness, I simply did not know how. In addition, as much as my mother and I adored each other, our relationship was fraught with explosive power struggles. Looking back, reflecting on both the relationships that fell apart and those that got stronger, I have this advice for anyone affected directly or indirectly by chronic illness:
• To the caregiver: You have taken on a selfless, yet challenging role. Do your best to ask for help when needed, and seek professional support where necessary -- through in-home care, counseling, and so on. Also keep in mind that there may be individuals in your life who want to support you; they just may not know how. Speak up and ask for what you need -- whether getting your house cleaned, receiving a hug or having someone listen to your woes. You may be surprised at what you find: Someone may do it!
• To the care recipient: Nobody wants to feel ill, isolated or overly dependent, so know that you are not alone. On the days that you are not feeling well, accept the help that others are offering, and know that, in general, those who are offering help want to help. On the days when you are feeling up to it, a simple gesture of recognition toward your caregiver (a "thank you" or "I appreciate you") can go a long way in maintaining a happy, healthy relationship with her.
• To friends and family of the caregiver and care recipient: If you want to help, but don't know how, ask. Keep in mind that the smallest gestures -- like sitting by the bed of an ill friend and chatting like "the old times" -- can absolutely transform someone's day. A reminder of what life was like before the illness, for both the caregiver and care recipient, is a breath of fresh air.
• To the community of the caregiver and care recipient: As in the case of friends and family, ask what you can do to help. Offering up a walk in the park, dropping off a chocolate milkshake or picking up some items at the market will make a difference in the life of the caregiver or care recipient. Sometimes, the gesture alone is enough. Even if the caregiver or care recipient turns down your offer, chances are that you will have warmed her heart and brightened her day.
Love is not simply about candy hearts, fancy dinners and risqué lingerie; rather, it is about truly being there for someone. So this Valentine's Day, I invite you to stop a moment and reflect on the people in your in your inner and outer circles. Ask yourself: Is there someone who needs my help? Then go out there and give it.