Power to Persevere: (Re)Build Relationships

By Kristine Cichowski, MS

Kristine Cichowski, MS,

I was sitting in the family resource center on a crisp winter day when an elderly man rolled in on his motorized scooter. He was a big man with broad shoulders, clearly over 6 feet tall if he were to stand. His petite wife was around 5 foot 2 inches tall. Cute as could be. She wore jeans (clean and pressed) with a black leather motorcycle jacket. He was 86, she was 82. He wanted to show me a book he was composing for his family. “My goodness, this is beautiful. I never expected to be reading poetry!” Smiling, I went on to say, “I have to admit, I didn’t take you for a poet!” He leaned over and said, “Well, you know, when I had this stroke everyone was trying to tell me what I was supposed to do to get back on my feet. The truth was, the only thing I had on my mind was how I was going to make love to that woman over there!” He pointed to his wife and she blushed. He went on, “We were wild and wacky in our day and we haven’t changed a bit!” At that point I recall thinking, “TMI (too much information)!” And then he shared more. “Nobody was thinking of how important that was to me. I began to write down my feelings as another way to show that my love is still strong.”

When someone is challenged with changes in health or becomes a family caregiver, relationships of all types can shift. Shared experiences may get placed on hold and the way we interact and bond with each other can get disrupted. This can range from romantic or platonic relationships to casual friendships. People often are unsure of what to say or how to approach each other both as friends and lovers. It’s easy to focus on what’s changed or lost and lose touch with who you are and ways to continue to relate and interact with each other. This is why it is important to be intentional in creating, building and redefining relationships.

It may sound trite, but taking a look at your or your loved one’s personal presence can make a positive impact on relationships. I’m not saying that you have to look like you’re going out on the town every day. Taking pride in personal hygiene, paying attention to your body language, and your attitude can help keep communications open and inviting. I recall my Dad’s physician commenting to me on how he couldn’t get over how great my Dad looked and smelled every time we went to the doctor. He’d say, “As people get older they often let personal hygiene go to the side because of the effort it might take.” After Dad had a stroke he was challenged with frequent bouts of incontinence and food spills due to poor dexterity. It was important to him to always wear clean clothes and look presentable. This took effort, but it paid off. People would see Dad and say, “Carl, you look great!” He’d smile and say, “I feel like crap, but I’m glad you think differently!” Dad had a lot of one-liners. He tried to keep things light and did as best as he could to stay positive despite his declining health. This helped me stay positive too. I’d recall that Dad didn’t tolerate complaining when my brother and I were kids. If we’d whine he’d say, “If you say so” and walk away. “No one wants to be around a complainer.” This went a long way in helping me as a caregiver. Being positive and matter-of-fact regarding my caregiving responsibilities made it more inviting for people to engage in activities and even, on occasion, offer help. I also found this to be true when I cared for my mom.

When Mom had chemotherapy after a double mastectomy, she lost all of her hair. We all were especially sensitive to how this might impact her because she was a beautician. Hair was her life. Surprisingly, she joked saying, “Well, now I don’t have to pluck my eyebrows! But, if my eyesight gets any worse, you better let me know if I have chin hairs!” Mom knew how hard it was for everyone who loved her to see her go through these changes. She took time to put on make-up and look her best. It made her feel like her old self. For many of her friends it was heart-breaking to see her go through physical changes. Mom wanted others to understand what she was going through, but not be afraid of it. When her closest friends or family would visit she’d occasionally yank off her wig during conversations just to jolt them with a laugh. She knew that a little self-disclosure and humor could help people confront their worries and concerns. Mom wanted everyone to know she was the same person they knew and loved.

We all were mindful of how our personal presence set the stage for staying connected with others. We also knew that life had to be more than just going to the doctor or for treatments if we wanted to retain relationships and develop new ones. After a while you get pretty tired of answering the question, “How are you feeling?” When you’re coping day to day with changes in your health and your life, you get to a point of not wanting to be reminded of what is and what isn’t working. You soon learn that if you don’t have any other subject to talk about, most conversations end up being about your health or lack of it. Constantly talking about health or challenging situations can also push people away, including your own spouse and immediate family and friends. Now this isn’t to say you can’t share your feelings with others, it’s just to remind you that your personal identity stems beyond your caregiving or health condition. Relationships, whether they are casual or intimate, typically revolve around shared interests, experiences, and values. If these begin to fade, relationships can erode.

It’s important to not let your role as a caregiver become your only identity. There are many other pieces of your personality and life that made up your authentic self. For me, I had to be mindful that I was also a wife, a mother, a sister, a niece, a cousin, and friend. Each of these relationships needed some level of nurturing if I wanted them to stay strong. It could be extending myself with a kiss of appreciation to my husband or a phone call to let someone know I was thinking of them. I found that sharing unique experiences with my husband, kids, and friends where my focus on being with them was the only item on the agenda was most helpful. For people who are most close to you, it’s helpful for them to see the side of you that they are most familiar with and enjoy. Sometimes you have to pull yourself out of your caregiver role in order for that to show. Setting aside time to go out, even if it’s brief, can make a huge difference. My husband and I got in the habit of connecting with our best friends in town after 9 pm on a weekday or Sunday night. By then, the kids and Dad would be settled for the night and it was easier to find someone to help. We’d get a breather for some time to catch up on life. When life was chaotic this late night gathering was our respite. Ironically, it became our routine well after the kid’s bedtime surpassed 10 pm. When friends would invite me out, I’d make a point to always say, “Keep calling and asking me. One day I will be able to make it.” Their calls and email invites helped me stay focused on planning ahead. I made a point to get out and have fun even if it was infrequent. It was beyond therapeutic. I had to be persistent.

There are many road blocks and detours in caregiving and chronic illness that can throw you off schedule or discourage you from staying connected to others. Some things may take longer plus there’s a natural tendency to gauge success based on whether or not you’re able to participate in the same way as before. When you use the past life as your measure of success you can set yourself up for discouragement and toss in the towel. I found that giving up before you even try serves no purpose. Being open to new approaches or activities is key, but sheer determination to not let your caregiving or health situation get the best of you is what really makes the difference in your relationship success.

I recall that Dad was invited to a 75th birthday party for a close friend. He woke up that day with back pain so excruciating that he could barely get out of bed. We all consoled him saying, “Don’t worry Carl, Bernice will understand. Stay home and rest.” The entire day was filled with Dad’s friends telling him that he’d best take care of himself and stay at home. Mid-day it dawned on me that we lost sight of Dad’s interests and were responding to this situation based on what was convenient. I asked Dad, “What do YOU really want to do?” He replied, “I feel lousy, but I really want to go to the party.” When I said, “Great. We’ll figure out how to get you there.” He perked up. “Oh, I don’t want to bother you,” he said. “No worries, Dad. We’ll just take our time and if it gets too tough we’ll come home early.” Everyone rallied. The kids got dressed without too much commotion and we all loaded in the car. When we got to the banquet hall everyone was shocked. You would have thought the party was for Dad instead of Bernice. The entire experience brought him so much joy and it made us feel good that we got him there. His friends were delighted to see him and it was fun to see them reminisce and share laughs. Dad was still in a lot of pain, but he felt good that he didn’t miss an important event. The best part about this was that Dad created a new memory for all of us and taught us a lesson in perseverance. Years later, no one remembered how lousy Dad felt that early morning, but they did remember the fun they had with Good Ol’ Carl.