LOSING INDEPENDENCE

If you're caring for a loved one who is going through cancer treatment, there are some important things to consider in how you approach the situation. Good caregiving isn't about taking over the care of people. It's about empowering people. It's about finding ways to help people remain as independent as possible on as many levels as possible, while accommodating their limitations.

Kids know they are dependent on the adults around them. When they are facing the loss of their capabilities, they don't worry as much about surrendering their independence. They often enjoy being nurtured. Sometimes it's tough to push kids towards doing more for themselves.

Adults, on the other hand, usually love their independence. They want to come and go as they please. They want to make their own decisions about their lives. And losing these opportunities can result in great frustration, depression, and anger.

Cancer treatment sometimes can interfere with the thinking process, not just the physical body. People develop "chemo brain" because chemotherapy often affects the nervous system. When my mother was going through chemotherapy, it affected her ability to play Scrabble and do her beloved crossword puzzles. There are ways to compensate for this kind of loss of ability -- for example, using a dictionary while playing Scrabble and making the game less competitive and more cooperative can help. Focus on building upon the words, not upon counting the scores. If you offer up some help, you are changing the atmosphere of the game-playing and adding an element of camaraderie that can take away some of the sting of "chemo brain". You'll have plenty of time to be competitive again when your loved one gets over the effects of the chemotherapy.

I found there was little that could take away my mother's pain over not being able to complete a crossword puzzle. That was a big loss for her during chemotherapy, because it was in activity in which she excelled. She always worked the puzzle in ink, zipping through it. I bought her a crossword puzzle dictionary, which she kept on her side table. But the biggest help sometimes seemed to be having the opportunity to ask me, "What's another word for...." We would discuss the possibilities. My mother knew I was not adept at crossword puzzles. (You could tell me the world is about to end and the only way to save it is to complete the crossword puzzle in front of me. Trust me -- we'd all be goners.) By engaging in dialogue, she could stimulate her brain to focus better, and that would often allow her to recall the appropriate word.

Mental focus and clarity can be dimmed by chemotherapy. We found that out when my mother really wanted to drive again. The neuropathy was already an issue, and she wasn't able to control her limbs as well as she wanted. But she really wanted to drive again. I followed the doctor's recommendation to take my mother out somewhere and let her practice first, before hitting the open road, to see how she would fare. It didn't go well. There were too many things for her to do, her timing was off, and she started to panic. Chemotherapy can really affect actions and reactions.

What do you do if your loved one is affected by "chemo brain" and neuropathy, to the point that it interferes with independence? Obviously, someone who is that impaired should not be driving. But are there other options that can help your loved one feel a sense that he or she still has some independence?

If you make errands more of a social opportunity than a chore, and if you combine it with pleasurable activities, like grabbing a bite to eat at a favorite restaurant, you are putting your loved one in the position of being more equal to you, because you are getting something out of the experience, too. See how that works? Dependence means you cannot function without assistance from someone stronger than you are. But if your loved one has something important to offer, and it helps to equalize the relationship, that can make a big difference.

My mother loved to eat out. There was nothing more fun than being in a crowded restaurant and watching life happen. She was a people person, and being home because she had physical limitations seemed to steal the life out of her. Throughout her cancer treatment, we adapted our activities to fit her special needs. When she was feeling good, we would pop into local restaurants. One of her favorite places was a family-owned breakfast and lunch place, where the waitresses and bus boy made a big fuss over her. I almost always let her pick up the tab. Why? Because I found that when I picked up the tab, it threw our relationship out of whack. She could afford to pay the tab more easily than I could. That was her contribution to our relationship. If I picked it up, it created an imbalance -- she was beholden to me not only for her physical care, but for her food and drink. That tended to spoil the fun atmosphere of the outing.

I found other ways to help her maintain a semblance of independence. Banking was difficult at her branch, because every time she wanted to cash a check, she needed me to process the money through my own bank,  she needed to go to the bank herself to cash the check, or we had to use a joint account that was set up to allow me to do her grocery shopping. She was frustrated that the only way she could access her own money was by following a ridiculous course of action. By introducing her to an ATM card, not only could she access her money 24 hours a day, by sending me to the bank, it was her money and her account. I was recorded withdrawing the money and I always got a receipt. She learned that she could always know the exact amount of money in the account with every ATM transaction, so that was reassuring to her.  That kind of situation requires a great deal of trust, however. The caregiver has to protect the rights of the cancer patient and not abuse the financial responsibilities of accessing someone else's bank account. It was a good option for us when she didn't have the physical stamina to get herself to the bank.

Choice is something that gives every human being a sense of independence. When we can choose our options, we feel like we have some semblance of control over our lives and the directions taken. Cancer can rob people of this in subtle ways. My mother went from being an active shopper, complete with coupons and discounts, who thrived on finding deals and bargains, to being on the bench, unable to make decisions about how her money was spent and what was brought home for her. It is so important to involve cancer patients in the decision-making process and to enable them to the best of their abilities to remain a part of the household. By asking my mother what she wanted, and giving her the opportunity to provide me with a modified shopping list, she still had the chance to make decisions on how money was spent. It's not an ideal situation. It's a compromise. But with cancer treatment, usually the patient resumes a more normal life as time goes on and the treatment is successful, or there is a lull during remission. If you, as a caregiver, can appreciate the opportunities provided at that time, and you step back and empower your loved one, it really does make a big difference in the overall attitude of your loved one. Knowing that the dependence is temporary makes it easier to accept.

Think about it. If you believed that your entire future was in the hands of another person, and you had no choice but to follow, wouldn't you be incredibly frustrated? When the loss of independence becomes an issue for a cancer patient, watch out! Do everything in your power to recognize that frustration and to find ways to help your loved one adapt to it. Recognize that by empowering your loved one to do other things successfully, you are helping him or her overcome a very real limitation in a realistic way.

If this is your loved one's first round of cancer treatment, the physical changes can be especially scary. Your loved one may have been diagnosed without any symptoms. Or there may have been warning signs that something was not right. You should ask the cancer treatment team what to expect and when to expect it. What is considered normal for your loved one? My mother was on oxygen and in a wheelchair when she began treatment for her lung cancer. She had already lost a great deal of her physical independence. Cancer treatment gave that back to her. Not only was she able to go without oxygen for a considerable period of time, she was able to dance again, to explore, and to participate in events with her family and friends. That was a very important thing for her. While the cancer treatment did create physical limitations, these were temporary, and as the chemotherapy moved out of her system, she was rewarded for her patience with the chance to make more decisions and to do more physically.

If you have a loved one who is frustrated by the loss of independence, consider having a frank conversation about it. Brainstorm ideas about how to solve the issues most important to your loved one. My mother often felt left out of important decisions. Sometimes, the simplest fix was to include her in the process, even if it was something as trivial as getting a taillight fixed on her car. Taking her with me to the garage and letting her sit in the car while the mechanic installed the new bulb mattered. It meant that she could pay the mechanic directly, could see the taillight was working again, and could feel like she was able to maintain her own car. She might not be able to actually drive the car, but it was still hers, still in her name, and she still had control over how it was serviced. When you're talking about independence, it's often the little things that matter most. By bringing my mother along and making her part of the process, she could feel like she still played a vital part in her own life. She didn't always have to have everyone do things for her.

This is even more important in the home. If your loved one is frail from the effects of cancer or chemotherapy, he or she may face real dangers that can be addressed. Sometimes the simple act of getting in and out of a bathtub can be a challenge for some cancer patients. Installing a handicapped rail is a simple, but effective fix. If you're handy and you know how to locate wall studs, you may be able to do this yourself. If you're not, ask a relative or friend with experience, or hire a handyman. Sometimes getting in and out of the house can be a huge challenge, especially if your energy level is down. A handrail is important for people who are unsteady on their feet. If you know your loved one tires easily, and the trip from the house or apartment is rather long, having a place to sit for a few minutes can make a big difference. Put an outdoor chair half way along the route from the house to the car. Sometimes I would busy myself with the garden while I waited for my mother. It let her take her time and I got to pull the weeds.

Cancer patients with neuropathy often have great difficulty dressing themselves. Do you realize how much we rely on our fingers when we are dressing? Butttons and zippers are the bane of people with neuropathy. What's the solution? If you can, recommend clothing that easily slips over the head or hips. Elastic-wasted pants allow patients more independence in the bathroom. A A man might choose a polo shirt over an Oxford button-down choice and forgo the tie. A woman might choose a knit blouse with a flattering neckline she can pull on, instead of a blouse with lots of buttons.

My mother was absolutely crushed when she lost most of her hair during chemotherapy. And wigs just weren't her style. It doesn't matter how many people tell you it's no big deal that you lost your hair. If you feel it's a big deal and you are sensitive to it, it's a big deal. But I found a way of dampening the dismay. My mother had a thing for colorful cotton slacks. Bright florals, plaids, and prints were her signature. When she lost her hair and needed to wear a cap, I bought fabric and made her a number of coordinating outfits. The slacks had elastic waists that made dressing easier. I designed a "chemo cap" myself, and it was easy for her to put on and wear. Sometimes I would add a fabric rose or some braiding to the cap. I even once threatened to make her a "Carmen Miranda" chemo cap, with fruit dangling on it. She could handle the loss of her hair because she felt she was still making a fashion statement for herself. People would comment on her outfits when she was at the cancer center. When you know you look good, you feel better.

I once saw a young woman out at a restaurant, dining with her husband. She was wearing a kerchief on her head and had that pallor that cancer patients sometimes have when they are going through treatment. But she had on a wonderful blouse that coordinated with her kerchief, and the color was reflected on her face. As I was leaving, I stopped at her table to tell her that was a great color on her. It wasn't about the cancer or the kerchief. It was about the dignity she showed when she dressed herself to go out to dinner. This was a woman who was showing her own character and strength in the choices that she made. I appreciated that. She looked good and I thought she ought to know that. But then, I understood my mother's own doubts about herself through the chemotherapy treatment. No one wants to feel like he or she is less than a person because one's hair falls out. The truth is you can still look great during cancer treatment and you might as well make the best fashion statement you can. When you embrace that concept, you are embracing a mental independence. You are choosing to be who and what you still are, regardless of the cancer and how it affects your life. You are saying, "Here I am world -- take it or leave it!"

When it comes to jewelery for patients with neuropathy, sometimes it's easier to leave in a pair of "everyday" earrings, rather than changing them every day. Sometimes it's easier to wear bangle bracelets and longer necklaces than choices with clasps that require fine motor skills.

Some cancer patients find that cooking becomes too difficult during treatment. Even this can be adjusted to suit your loved one. If you act as a sous chef and your loved one appreciates the need to protect himself or herself from the dangers of cooking with neuropathy, he or she can still be productive in the kitchen. I used to chop my mother's ingredients for her, measure things, and prep the pans for her. That allowed her to continue cooking. My mother made a great chicken cacciatore. Being able to still manage to make family favorites meant that she was a productive human being. By acting as her side kick, I made sure she had everything she needed, but I also made sure she got the credit for the meal. Sometimes I would do the ingredients the night before, so that when she went into the kitchen, it was all about her. She was able to use her limited physical energy in a positive way and we all got to enjoy the end results. Are there ways you can help your loved one to still engage in favorite activities, by providing some support services that still allow him or her to accomplish something meaningful?

In the end, cancer treatment is really not that different than many everyday struggles. If you remember that you spend your whole life adjusting to your circumstances, if you appreciate the need to adapt in your normal life, you can help your loved one to recognize that this skill is just as important during cancer treatment. Aim for as much independence for your loved one as is humanly possible, even if it means changing your definition of independence. Be creative. Think outside the box. Empower your loved one so that he or she feels life is worth living. Every human being, even someone who is bedridden, has something to offer that is valuable. Dig deep and then appreciate it when you find it.