Most of us spend much of our lives trying to live up to the expectations of others. From the moment of our birth and our parents’ eager anticipation of a first smile, we look toward the outside world for a nod of approval. Words like “straight A student,” “supermom,” “ideal wife,” “good son,” and other such stereotypical phraseology may be either a goal toward which to strive or, more likely, a set-up for feelings of frustration and inadequacy when we think we fall short.
A Change of Attitude
It’s no different in the world of kidney disease. Shortly before we met in 1967, my husband, Jerry, was diagnosed with chronic kidney disease (CKD). In 1980, he began a 25-year stint on home hemodialysis (HHD). During those years, he was a model for everything positive and hopeful about living well with CKD.
When people first learned that Jerry was on home dialysis and that I was his care partner, we frequently detected a not-so-subtle change of attitude. Jerry usually got the doleful “Oh, how awful for you” look while I instantly took on the persona of “the caregiver”–a sort of paragon of selfless virtue, a barely concealed halo over my head. That’s not me, not even close! However much I abhorred that line of thinking in other people, I initially imposed similar unrealistic expectations on myself.
What Are Expectations?
Be perfect 24/7! Never get angry because, after all, I was healthy and my husband was not. He deserved an ideal wife now, didn’t he? Banish any inkling of depression or anger and be cheerful all the time. Plus, as a registered nurse, I should always be able to manage his care calmly and effortlessly, shouldn’t I? Never mind the fact that Jerry was working full-time, still swinging his Ping irons on the golf course, and leading a supercharged life. I conveniently forgot all that.
The word “expectation” conjures up a host of associated feelings–oftentimes the nasty, destructive ones. But what are expectations? Checking the dictionary, I found the perfect description of how my husband and I coped with 25 years of HHD. Webster offers this wonderful uplifting definition of “expectation”: “Looking forward with hope!” Hope, sprinkled with a generous dose of humor, is the way Jerry dealt with his kidney disease.
Feelings at the Right (or Wrong) Times
That’s not to say it was always easy. Life–as Jerry was quick to point out–is seldom easy for anyone, with or without kidney disease. Delivered with a lighthearted chuckle, he would offer up one of his signature mottoes: “It’s a great life if you don’t weaken.” Sometimes, though, one of us (invariably me) would backslide into a few moments of sniveling self-pity. It took me a while to realize that feelings don’t come in neat little packages or in any fixed or logical sequence. Sometimes they just pop up for no discernible reason at the most inopportune times.
What first attracted me to Jerry (besides his self-described “bedroom eyes” and his 1966 Mustang convertible) was his total zest for life, his often silly sense of humor, and an eagerness to experience everything 110%. Kidney disease never changed that outlook.
Gilda’s Club, a place of support for cancer patients, maintains the philosophy that every person’s way of living with cancer is respected. Love and laughter are their hallmarks. (Not a bad idea for the kidney community either!) So, while each patient may approach kidney disease and its treatment differently, what follows are just a few of the emotions Jerry and I experienced.
Anger and Resentment
When we were first told that dialysis was inevitable, I felt angry at whatever and whomever happened to be around. I flew off the handle at Jerry, at patient friends, and at the dog. Then I learned a few essentials:
- Get angry enough not to let kidney disease take over your life. Anger can be a powerful incentive, a positive force.
- Channel anger into positive activity. Learn all you can about CKD and the treatment options.
- Acknowledge that negative feelings are acceptable. It’s how we deal with them that matters.
- Develop outlets for negative emotions. Take a walk or go for a ride. Read a book. Occasionally, Jerry and I even had a snowball fight. And how about a pillow fight?
- Realize that it’s normal to resent the disease, but resolve not to resent your partner.
- Be creative. For example, I would occasionally tell Jerry to cover his ears because I needed a good scream!
- Cry sometimes. Tears are not signs of weakness. They can be cleansing and healing.
Fear and Apprehension
One Valentine’s Day, in 1980, Jerry and I were in Iowa City for an initial nephrology consultation. He was logical and calm while I was simply scared. As the physician described our options, we both zeroed in on his strong recommendation to consider dialysis at home. It sounded ideal, but now I was really terrified!
As we got in the car for the trip home, Jerry’s only statement was: “Just let me think a minute.” Somewhere down the road, he glanced at me, softly told me he loved me and asked if I was willing to be his partner in this new endeavor. When I nodded “yes,” he cheerfully replied: “Well, then, let’s get on with it! First stop is Dairy Queen to celebrate our decision.”
Following are a few things I found helpful in dealing with fear:
- Talk freely and openly about it.
- Find ways to begin talking about the scary stuff. No one wants to admit that bad things can happen.
- Unfortunately, the difficult issues need to be addressed. Partners must find a safe, even humorous, way to initiate this type of conversation. Sometimes I started with the ridiculous: “I’m afraid of a raccoon getting into the house again.” (Not so crazy. It actually happened.) Then I would zero in on the serious.
- Decide that nothing is too trivial or serious to discuss.
- Find a private place that is peaceful and soul-refreshing. Silence and alone-time are also necessary.
- Listen to each other’s viewpoint without judging. Don’t interrupt. Really listen!
Determination and Courage
“I intend to master this faster than anybody else,” Jerry announced to Daisy, our training nurse, on the first day of home training. He was determined to beat the record. I politely reminded him that I was his shortcut. After all, no one had to teach me needle insertion or sterile technique. Jerry wasn’t unafraid, but he was determined never to let fear overwhelm him. He set a goal and worked hard to achieve it.
Here are some tips for being courageous and determined partners in care:
- Take one day at a time. If that is too stressful, make it one hour at a time.
- Relax. If you are learning home dialysis, the new information can be overwhelming.
- Break it down into manageable parts. Think of some complex task you have mastered.
- Constantly ask questions. It’s the job of the training staff to answer them.
- Be determined to become an informed patient or partner. Knowledge is power.
- Resolve to be a compliant patient. Do it because you will be healthier. Jerry often lusted after bananas or a loaded baked potato, but he seldom succumbed. He focused on long-term health.
- Be partners in the best sense of the word. Don’t dwell on your expectations of each other. Focus on being a team, accomplishing things together.
Humor and Fun
Jerry’s sense of humor bordered on the ridiculous. I could fill a book with the silly but endearing things he did. They also drove me nuts at times.
“Can’t you be serious about anything?” I’d ask.
Jerry could see the humor in almost any situation. When asked if dialysis was hard on our marriage, he would reply with a deadpan expression: “Of course not. Denise needs me to pay her department store and long-distance phone bills, and I need her to put in my needles. It’s a match made in heaven.”
Following are some things you can do to keep fun and laughter in your life:
- Laugh a lot, every day if you can. Sometimes that is truly the best medicine!
- Look for the humor in ordinary situations. One time, with lights out, Jerry stumbled downstairs for a snack. When he realized he had mistaken the dog’s pork rinds for the packaged onion rings, he was horrified. I stopped laughing long enough to ask if he had checked the potassium content!
- Act silly once in a while. I remember wanting to crawl in a hole as Jerry and my brother decided to recreate Monty Python’s silly walks in a terribly public area.
- Be a kid occasionally. Jump rope. Make snow angels. Have a scavenger hunt. Go camping with your child.
- Resolve to smile even if you don’t feel like it.
- If all else fails, watch the Three Stooges.
Love and Affection
It was July 12th. Jerry came in from the garage grumbling and muttering. He said he had locked his wallet in the car’s glove compartment and was too tired to go get it. Would I mind…? Feeling sorry for him, I took the keys and slid into the car. There, in the glove box, was a small package tied in ribbon with a note that said “Happy Anniversary, Love.” The pearl bracelet was exquisite, but the idea was priceless. I cried, of course.
Here are some ways we found to express love and affection:
- Express affection in simple ways every day. Whenever I was out of sorts, Jerry would beckon me to the dialysis chair with a wiggle of his finger. He would take my hand and gently kiss it. And… since he often ate lunch in the office dining area, I would write love notes to Jerry and slip them in his brown bag (the more embarrassing and steamier the better!). He learned to open his lunch warily when coworkers were around.
- Keep romance alive. Kidney disease and dialysis don’t absolve us from being a spouse.
- Don’t smother one another. I know I often drove Jerry to the edge by my constant question “Are you all right?”
- Escape from chronic disease. We would spend a night at a bed-and-breakfast or just jump in the car and head to some other place.
- Create a safe haven for each other, a place to relax and be at peace.
- Support each other’s respective roles. It is difficult to have a chronic disease, but it can also be heart wrenching to be the care partner.
- Cuddle up on a cold evening… or any evening.
Joy and Happiness
On January 14, 1982, Jerry held our son for the first time. It was love at first sight. Less than a week later, Jerry observed: “Dialysis is pretty easy. This parenthood thing could be really hard.”
In July 1994, to celebrate our 25th wedding anniversary, we hosted a party for over 100 of our friends. I was as nervous as a new bride. As “The Shadow of Your Smile” played, we danced and fell in love all over again.
Those were days of utter joy and perfect happiness. On a daily basis, we tried not to let kidney disease diminish our enjoyment of life.
- Celebrate everything whenever you feel like it. Celebrate the moment.
- Plan ahead, but live each day. Don’t dwell on “what-ifs.”
- Realize that dialysis is only one part of life, only several hours of each day if you are on HHD. Another of Jerry’s one-liners was: “Gotta eat, gotta sleep, gotta work, gotta dialyze. No big deal.”
- Work at creating happiness. It doesn’t just happen.
- Dance and sing. Jerry had a wonderful voice that he put to good use in college musicals. He could recall or invent a song about any word in the English language. The results could be delightful and fun or just plain corny.
- Reminisce. Revel in happy memories.
“A Legacy of Inspiration”
Just a couple of years before she died in 2001, my mother-in-law finally told me a touching story about Jerry’s kidney disease diagnosis. In 1966, during the Vietnam War, Jerry reported for his military physical. He flunked with a capital F (there was protein in his urine). Tests and a biopsy ensued. On the weekend following the CKD diagnosis, Jerry drove to his parents’ home to break the news to them. They too were devastated.
My mother-in-law continued: “Jerry told me that no one would want him now, that no girl would look twice at him.” With a lump in my throat, I remember replying that I not only looked twice at her son, but I looked again and again, falling deeply in love with the special man I saw. I never stopped looking for 35 years. Jerry’s outlook of hope, courage, humor, and laughter is a legacy of inspiration.
Following my husband’s death, I struggled with many questions, including my role as Jerry’s care partner. The most comforting advice I received was from Bruce Bartlow, MD, a nephrologist and ethicist in Redding, CA. His wise words are also applicable to anyone dealing with chronic disease. He wrote: “When someone dies, we tend to find where we think we fell short: not talking about end-of-life decisions, the time a needle infiltrated or we were short tempered. Please make a stack of all such times, and compare it to the thousands of moments you were there at your husband’s side, loving him, bearing responsibility for how he did, putting in thousands of hours.”
I have mentally compared those “stacks” hundreds of times over the past two or more years and have found solace. Jerry never expected me to be perfect. He only expected my love and support.
What do I think?
I think I did just fine.
About the Author
Denise Eilers, RN, BSN, is a healthcare professional whose husband, Jerry, was on home hemodialysis from 1980 until his death in October 2004. She teaches nursing fundamentals at United Township Area Career Center in East Moline, IL. Denise resides in Davenport, IA, where she volunteers with Genesis VNA Hospice.
04/01/2007
Web ID 306
