Here are some tips for cancer caregivers. Caring for someone suffering from an illness is hard, there’s no other way to put it. Most of the time it gets easier but in the beginning right after a surgery, it can be very emotionally draining and frightening. Caring for someone you love is even more so as there is an emotional connection, a deep desire to alleviate the pain and suffering we see in the eyes of the person whose bedside we are hovering over.
There are no books for that, no class you can take with a test afterward to let you know you are capable of doing this and no pass-fail exam to study later so you get the parts right that you may have missed.
Caregiving is more of a learn-as-you-go event. I say event because, that is what we call the times in our lives that change us. Events bring out joy, tears, happiness, or pain. “Events” that we look back on and just know that we are different for having experienced them. Caregiving is like that. It changes us. Not only for the moment that we are providing it, but, down to the very core of our being. It brings with it a sense of responsibility for the well-being and even the very life of another person.
These changes can bring about extreme emotions in both the caregiver and the person he or she is caring for. Sometimes we forget that not only is our loved one affected by their illness, they are also affected by the knowledge that someone else’s life is altered. This can bring depression, anger, resentment, even fury to either or both people involved.
You must remember that as a caregiver, you are not only responsible for the needs of another but, yourself as well. Putting yourself last in line for needs being met is a natural response but one you should try to resist. If you burn out or get sick, you’re not doing anyone any good and you might end up needing a caregiver yourself.
What I am going to attempt to do is give some real life insight and some useful pointers to assist in alleviating some of the more unpleasant side effects of caring for a loved one. In the beginning, many people say, “I can’t do this, I’m not strong enough” while others say, “This is going to be easy”.
The first group usually feels that they will not be up to the task— they have a fear of making a mistake, a fear of doing something wrong, a fear of causing further damage to an already sick person. It is natural to feel that way. If you make a mistake at work, you can be reprimanded, no big deal. If you make a mistake with caregiving, someone can be injured or worse. At least that is what that little voice inside your head tells you. It’s far from the truth but a valid concern nonetheless.
The second group is the one in for the bigger surprise. As easy as you think it is going to be, you end up wishing it were only as hard as you originally thought. Caregiving, for the most part, is more than making it to doctors appointments on time and hand-holding. That is a big part of it, but it goes so much deeper. There are physical responsibilities, emotional responsibilities, plus all the regular day-to-day errands.
What I want to help you with is finding the balance, the balance between caregiving and taking care of your own needs. To be able to receive care your-self, sometimes from yourself I think is just as im-portant as learning to care for your loved one. There will be times when you have to take yourself out of the caregiver mode and decompress. You might do this by taking that friend up on an offer of “If there’s ever anything I can do…”. Friends say this all the time don’t they? Well, call one of them and say, “Remember when you were asking if you could help?” Then ask them if they could sit with your loved one while you go out to run some errands.
If you want to go get your nails done or get a pedicure, go to the driving range and hit some balls, you should go! Taking care of yourself is not selfish; you must take care of yourself mentally as well as physically. Otherwise, how will you be able to continue caring for your loved one?
Men and women cope in different ways. In my experience women are social—we talk to each other, we cry together, we laugh together, and we lean on each other for support. Men are more visual; watching a ball game on TV will sometimes calm the nerves (Don’t ask me why). Alone time is important for both sexes, so are friendships, and keeping as close to the old schedules as pos-sible. If you used to go to Thursday night bowling then keep that up; if you used to go out with the girls on Tuesdays, make arrangements for someone to come relieve you. You need that time, and your loved one just might like the change of company too. Don’t take it personally but not many people can be cooped up for hours or days, even weeks at a time with one person and not get cabin fever.
At the very least your loved one will know that they are not a burden and that they are not keeping you from living your life and enjoying the company of your friends. This is a huge cause of guilt for a person who depends on another. Fear that they are a burden, that they’ve ruined your life, can eat away at the best of relationships. Sometimes resentment can begin to form on both sides. I don’t care how much you love that person, if you allow your life to be completely centered on him or her, I guarantee you something will have to give. It’s better to keep it from happening in the first place. Remember to take a break if at all possible. One of the most important things to think of, and most often over-looked, is your support group. Who are they? Relatives, friends, church members, neighbors, these are all rich sources of assistance. The more you have the better. As soon as possible, invite everyone over (or out to coffee) to discuss this very thing. Chances are they are truly hoping to be of some help, they just don’t know what you need. So tell them. People want to help, they just need some guidance as to what to do. Provide them with suggestions.
Maybe someone can come by to read from a favorite book, and someone else can pick up the dry cleaning, another friend might be counted upon to sit with your loved one so you can just get out of the house for a while.
This is a good time to discuss the situation. Chances are, they are wondering but won’t ask, people are curious to know what exactly is going on. It’s not morbid to be curious, it’s human nature. Tell them about the cancer or illness. Tell them what you know, tell them about the operation, talk about your fears, just tell them whatever you are comfortable discussing. I recommend getting the correct information out there so there are no misunderstandings. This would also be a good time to tell them that even though you know their heart is in the right place, to please refrain from regaling you with stories of their own family members with cancer. This was a problem I faced quite often. As soon as anyone at work found out my husband had cancer they just couldn’t wait to tell me about their aunt or uncle or father who had cancer too. I learned to stop them right there and tell them “I know you have a story, but, please un-derstand how much I’m dealing with right now, can we talk about this another time?”
Ten Tips for Cancer Caregivers:
1. Straws: Drinking straws are very helpful to keep around and make it much easier to drink if sitting up is difficult. A rubber band around the top of a water bottle keeps the straw from sink-ing down into the bottle if you loop the last twist around the straw.
2. Variety: Keep various juices on hand as many people recovering from surgery need to keep hydrated and water just isn’t on the list of things that appeal. There are flavored drops available at many grocery stores that make plain water more palatable.
3. Night sweats: If pain medications are in use, profuse sweating is sometimes an issue. Changing the sheets can be very difficult on a daily basis and for me it was every few hours. I suggest bed liners, these can be purchased in medical supply stores but your local pet supply has the same thing for house training puppies. I know it sounds strange but the large size works great.
4. Dressing comfortably: Oversized T-shirts makes dressing and undressing much easier, larger arm holes and roominess are more comfortable while recuperating. It’s also easier to get at drains and bandages when they need attention. I cut up the back of the shirt from the hem almost to the collar, leaving the back open makes changing clothes much easier.
5. Keeping busy: An entertainment pack is good for all ages: crossword puzzles, a deck of cards, a CD of favorite music, a back scratcher. I kept a basket of things by the bed and later by the couch so my husband didn’t need to ask for every single thing he wanted. And don’t forget to put the remote within reach!
6. Small portions: Staying hydrated is very difficult when you don’t feel like drinking, especially if your loved one is on a chemo drug they can become dehydrated very easily. Handing them a large bottle of water to them may be over-whelming. I suggest four ounces of water in a small cup offered every half hour to 45 minutes. It’s an easy amount to drink, and over a day, more water will be consumed than from large glasses or water bottles.
7. Lists: Keeping an up-to-date list of medications, doses, and schedules is very helpful. Especially in the begin-ning, it takes the worry out of what to give when and if there is more than one caregiver, a check box sheet is helpful in keeping track of what has been taken so accidental double dosing is not an issue.
8. Pill Box: Pharmacies offer all kinds of pill boxes, I recommend the large seven day box with four sections, morning, afternoon, evening and bedtime sections, which help keep pills straight and you can see what is needed at a glance.
9. Peace of mind: Another item that is of great value is a baby monitor. Being able to hear when you are needed is necessary and having the freedom to go about your daily routine is priceless. They are designed to pick up the slightest sound from an infant so all a person has to do is whisper your name and you can hear it clearly. Some of the newer ones even have a video feature for constant monitoring of whatever the camera is pointed towards. Being able to know exactly when your presence is required provides peace of mind and it keeps you from running down the hall every 10 minutes to check. Some people like to use a bell but if an ill person, or you, have a headache well, let’s just say bells tend to get dropped (or thrown) never to be seen again.
10. Special diets: Many people recovering from surgery have special diets: find out what the doctor recommends. For other people, certain dietary needs will be required. If there are none, go out and buy some of those small packaged frozen meals. I know it sounds terrible but anyone recovering from surgery rarely wants to eat much at first. Packaged meals are also, for the most part, of much higher quality than they used to be but watch out for high sodium content. The kitchen has always been my favorite area of the house, for me cooking was my “down time”. If you hate it (or can’t cook) then by all means, cheat.
Once you get into a routine, don’t forget to take time out for you. Go for a walk, read a book, or, ask someone to take over for a while. It does not mean you are weak; it does not mean that you don’t care. Taking a break is a necessary means of staying healthy.