The Personal Impact of Caregiving: One Woman’s StoryPosted on August 25, 2013 by ECR Louisville in Blog, Caregiver Education, Home Care Non-Medical, Home Health Care (Medical), Respite Care
Kate Geurkink’s husband was diagnosed 6 1/2 years ago with stage-four kidney cancer. At the time of diagnosis, she was working as a woman’s health nurse practitioner and he was working full-time at the age of 70 as an ENT physician. Since the diagnosis, Kate’s husband has been in and out of remission, and Kate has been there every step of the way — not only as a wife, but also as a family care giver. The past year and a half, her husband has been home bound and is now considered “end stage” in his cancer. They keep fighting together, as he defies all odds.
Homewatch CareGivers interviewed Kate to get her first-hand perspective of the stress associated with care giving, the impacts of that stress on health, and the rewards of care giving despite it all. Following is her honest, endearing account of care giving for a loved one.
HWCG: What kind of stress is associated with caring for a loved one who is ill or elderly?
KG: I’ve found that the stress I’ve endured as a result of caring for my husband is like a ladder. You can climb up and down the ladder, and have stress associated with each level, but somehow the steps are always interconnected. One always leads to another.
I am constantly in and out of crisis mode. As the cancer worsens or my husband goes into remission, it’s in and out, in and out. It’s important to be aware when you’re in crisis mode, and know that you can — and will — come out of it. I’m the chief go-getter. I can delegate tasks and responsibilities to family and friends as much as possible, but at the end of the day, I am still fully responsible for my husband’s well being. I’ve found that people are willing to help at first, but 6 years later, they slowly fade out of the picture. I’m left to take care of him. I’m left to be chief.
I put myself second. I know that I shouldn’t. My loved one doesn’t want it to be that way. We both love and value each other, but over time, it was inevitable. I fell into second place; I lost my self-esteem. The company I have received over the past six years has been wonderful. There are always people who come to visit my husband. But most of them are coming only to support my husband, not me. Without the support I needed, I became burnt out — socially, spiritually, emotionally and physically. I often feel like an old, worn-out shoe.
People always tell me, “Take good care of yourself.” It quickly became cliché and most of the time, I don’t. Often, I’m numb. When I’m numb, I don’t eat right or go to the gym. I don’t take care of myself at all, let alone take “good” care of myself. I know I should but I don’t.
HWCG: What effects does this stress have on your health?
KG: After my husband was diagnosed, I kicked it up a notch for 3 months and took great care of myself, knowing I needed to be healthy for the long road ahead. Then, my appendix ruptured, my spine slipped, my hip cartilage tore, and I fell and broke my ankle. Since then, I have suffered from depression, high blood pressure, increased heart rate (when I’m in crisis mode), weight gain, lack of exercise, lack of motivation for self care, fatigue, anger, and drinking and eating to excess. My body has slowly torn apart. One day, I was telling my sister about all of the things that have gone wrong physically and she gave me this quote: “Often, the body speaks that which the soul refuses to utter.”
HWCG: All of this aside, what are the rewards of caring for your loved one?
KG: My relationship with my husband has deepened. Our friendship has become the center of everything. With each challenge, our relationship strengthens. Care giving has allowed me to be here for my husband like I never thought possible, and he has had to be here for me, too. We have come to share our deepest thoughts and feelings, since we’re always together and we’ve been floating along in the same boat for more than six years. My kindness has deepened like I never could have imagined. This line from the poem, “Kindness” by Naomi S. Rye gives me daily inspiration and reminds me why I do what I do. “Before you know what kindness really is, you must lose things, feel the future dissolve in a moment like salt in a weakened broth.” I now know what kindness really is.
HWCG: How do you handle/balance the stress so you can appreciate the rewards?
KG: You need a good professional as a guide. It’s as essential as having a primary care physician. I certainly would not set out on uncharted waters without a guide. If the first professional you approach doesn’t work, try another until you find a relationship that does. I found one and it saved me.
Lean on your family and friends. Often, people in crisis mode don’t reach out to their network for support. I have had to learn to speak honestly, and lean on my family and friends. It’s important to tell them when I need help (because inevitably, I do).
Let go of the people who can’t be there for you. I found that certain friends — who I had for years — were suddenly put-off by my tears, anxiety and fear. I had to realize that they weren’t true friends, and let them go. Creating the strongest group of emotionally supportive people possible was key to my sanity!
Get out of the house! Staying home and care giving all day, every day made me feel like I was living in a cancer ward deep within a hospital. This, combined with the fact that I have been watching my loved one slowly slip away was so powerful — it took hold of me until I was afraid to even leave the house. I didn’t want to leave my husband just in case something would happen while I was away. I slowly realized that I had to do something for myself. It’s important to take an hour, a day, or a weekend — whatever I need, whenever I need it — to get away and find myself.
I had to recognize that our society doesn’t prepare us for death. We are preoccupied with youth and physical beauty, so we often don’t know what to do when illness strikes. Out of deep grief has come loneliness, but it’s been important for me to recognize that death is part of life, and to embrace it. I have to let myself cry, let myself be angry — I have had to let myself feel to get to a point where I am at peace.
Don’t be angry with your loved one. It’s been hard for me to lose our relationship as we once knew it. We just aren’t the same as we once were, but I can’t be mad at him. I had to put myself in my husband’s shoes and know that he would be doing the exact same thing for me if the tables were turned. It has gotten me through all of the tough moments — when I don’t want to do this — when all I want to do is run away.